Thursday, March 14, 2013

THE WAIT ... OR THE WEIGHT ???

I was officially diagnosed with breast cancer in July of 2006.  A quick primer on that whole patience being a virtue thing led me to realize one thing.  Apparently, I'm not the virtuous type.  May be worth my time to check some of the other traits on that virtue list to see exactly where I DO fall on the virtue continuum.  Patience, definitely not my strong point.  Waiting.  I don't have to go there.  We all know how very much that sucks.

Right now, my mom is waiting.  Her first scan is next week.  Routine.  As if any scan is EVER routine but the point, it's not an "Oh My God, something is definitely wrong and we need to get you into a tube asap scan."  Instead, it's a pre-planned, "We are going to see if this treatment is working scan."  Because the oncologist sounded an alarm the other day about elevated liver enzymes, I'm pretty sure he would be doing a lousy doctor job if he doesn't throw a CT of her liver into the same scan.  Doesn't change any of the testing protocol.

There's nothing to talk about with the liver enzymes unless there's something to talk about and since we already know my mom has a "fatty liver" I jumped into action last night.  The medication she is taking is metabolized through the liver and CAN create issues in some people, specifically those who have even mildly impaired liver function.  Several months back, those enzymes were out of whack and resulted in hepatitis tests.  Negative. A. B. and C.  If the medication is elevating the enzymes, according to my buddy, Dr. Google, the dose can be halved.  I'm not worried.  I know her liver story.  I Just Hate Waiting.

In 2006, I waited from April when I had my first inkling something was wrong until October when I found myself in the chemo suite which is when I feel like I was finally doing something to address the cancer.  That's a long time and that's a whole lotta internet.  I need to know.  Everything.  Now.

Way back in 2006, I found things like the Sister Study which was still unfilled until the Army of Women sent out an e-blast and viola!  The study was filled rather quickly.  And really, where are all the women?  Still in the 370K range??  Seriously. What is UP with that?

I found Lillie Shockney when I was so damn confused by the fact that there were two separate and distinct things happening in one breast.  I couldn't wrap my brain around the fact that what was happening in one quadrant had nothing to do with what was happening in another quadrant.  I hadn't gotten my diagnosis yet.  I just had lots of letters on a pathology report.  ADH, LCIS, ALH, high grade, low grade... and Lillie was running a Q&A site for Hopkins.  I sent her a question.  I felt all high and freakin' mighty when she replied.  Most people were being talked off the ledge.  Me?  The response went along the lines of "if you are able to make it to Hopkins, we have excellent doctors to sort this out."

I covered the research aspect, located the clinicians who are at the top of their game.  And I found Laura.  She was a blogger when blogging wasn't an explosion in social media.  A trailblazer.  An excellent writer.  Witty.  Sarcastic. Engaging. And she had breast cancer.  And, there were "brants" on her blog.  Brag and a Rant.  If I recall, there were a series of posts that the brants were switched up to breast cancer rants.  I decided, for the life of me I don't recall why, to reply with a brant of my own.  I have no clue if I was moaning about drains or complaining about tissue expanders, I only recall that Laura replied.  I needed that connection.

When I began blogging, I remembered that blog, I remembered her name and of course, I remembered the kindness of a stranger.  Validating my feelings.  Laura is an accomplished writer.  Google her name:  Laura Zigman.  And, I am full circle with Laura.  Recently, Laura's dad passed away.  I saw it fly by in a tweet stream.  I felt compelled to offer my condolences.  And then I went on a hunt for the blog.  I did  find her old blogs but I loved the fact that we were of one mind at the end of 2011 when the NY Times ran a piece about the use of the word cancer.

Laura's post (and the accompanying video) is here, entitled "You Should Apologize for Saying You Had Cancer."

I wrote a blog post which I called, Looks Like a Duck, Quacks Like a Duck.

I can mention here that yesterday was a palindrome day just like I noted in my post.  I can mention that this was all about dumbing down the word "cancer" as it relates specifically to cervical cancer.  And if I am to be honest, I am appalled and disgusted that this story affecting a quarter of a million women in India is STILL buried.  Buried.  Just like women who died of this "non cancer."  They, too are buried.

For now, however, I want to savor these tweets.  Laura, during her moment of grief, took the time, once again, to reach out in an act of kindness.

I've Zig'd and I've Zig'd some more in this post which now makes no sense whatsoever, but I want to keep these tweets where I can always find them.  Yes, it means much when people connect.  Even if only through a computer screen.






5 comments:

  1. dear anne marie,

    maybe it's the weight of the wait? i loved what you wrote about laura, and will be zigging as well.

    please know i am thinking of your mom and sending my best, most powerful vibes for the scan to show all is proceeding as it should be. and i know your mom must feel so, so fortunate to have you for her advocate. please let her know that is the way all of us who follow your blog feel about you and all you do for us. this post warms my heart, makes me recall when i first found you, commented, and was welcomed by you with such compassion and kindness. please know that it has given me such joy and fulfillment to pay it forward, and that i bless the day i clicked on your site.

    much love, XOXO - and gentle hugs to mom,

    karen, TC

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    1. Dearest Karen,

      Yes, I do believe it's The Weight of the WAIT! I know my mom reads everything (when she's not running around... she's quite the social butterfly). I am certain she will see your beautiful words but I will be sure to share them with her, too.

      Your words have warmed my heart tonight. I've been running around for two solid days. Meetings at MSK, a standing appointment which will continue through the mid May, this follow up dental stuff and I feel as if I've been neglecting everything and everyone. I cherish every word, every comment and every blog where I see your kTC signature.

      Much love (from mom too),

      AnneMarie
      xoxox

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  2. AM, love the tweet exchange with Laura. :)

    I feel a bit better about your mom after reading this. If she has a history with her liver enzymes, then maybe that's just a 'normal' reaction for her. I'm keeping my fingers crossed for the scan next week. Sending you both love, as usual. Kathi

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    1. Kathi...

      Yes, she definitely has a history with the liver enzymes and I am SO thankful for the MSK portal where I was able to look at six years worth of blood work. They spiked and I remember how pissed off my mom was at the onco. "He thinks I have HEPATITIS??" We were laughing by the time that conversation was over. This latest call wasn't so funny because he specifically said, "not the meds" ... BUT, I sprang into advocate mode and did look at the medication and it had all sorts of info about liver function.

      Poor mom got an email from me that was so long explaining the possibility they will reduce the dose, statistically significant (and how that means about 2 months longer to keep the cells at bay) and how the next line of meds, should that be the choice are still not the big bad drugs. Like CJ told me, stuff happens.... and they deal with it and you move on. It's the stupid surprise phone calls that drive her AND ME completely batty.

      The tweet exchange with Laura was great. I can't remember all the recent crap but my memories of incidents from years ago are crystal clear. That one stuck in my head!

      Love to you, too!

      AM
      xoxox

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  3. AM, the power of even momentary connections in the blogosphere cannot be understated. I really believe we stumble on the blogs we need in the moment we need them. Zig zagging to the nth degree!
    {{{hugs}}} to momma!!

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