Wednesday, January 18, 2012

REGIFTING MY OWN WORK

Note:  Since there is a good chance the internet will be crashing all around me with this National Boycott The Internet where all these websites are doing a 12 hour "fade to black" protest, I'm pulling an entry from the archives.  I'm pulling an #OccupyMyBlog.

This was written and posted in July, within days of my brazen and bold maneuver to go public with my zig zag brain.  I can't think clearly.  I DO want to share some thoughts about statistics and surviving and living cancer free and the misuse of the word cure but the pain in my very swollen ankle is wreaking havoc in my brain.  I have foot in head disease.  No way I can embark on a writing journey where I will make any sense with my words.

With slight changes, this is from July.....  

I am a medical news junkie.  And, I am a medical advocate junkie, too.  This started, in part, when a friend who means the world to me was diagnosed with such a rare form of thyroid cancer, she had better statistical odds of hitting power ball, THREE times (AT LEAST three times), than she did of getting this cancer.

I quickly learned how to navigate the internet for established medical protocol, cutting edge research and THIS.  “This” is me trying to share whatever information I may have stumbled upon in my travels that might be useful to others. The internet is global brainstorming at its absolute finest.  Combining the information from major cancer centers, smaller research facilities, things already being done in Europe, and the real world experiences of patients who have shared their stories on support sites or in blogs has proven to be an invaluable tool.   

In the case of my friend, there isn’t a whole hell of a lot of stuff out there.  Medullary Thyroid Cancer narrowed even further to a subset involving a particular genetic mutation?  It’s worse than the haystack/needle thing.  Like I said, power ball.  Three times.  Breast cancer? Even being diagnosed with a less common type, which happens to have been the case with me...... pink ribbons everywhere.  

I love a good mystery and I love to solve problems.  I love the if/then logic that goes along with proving a geometry theorem.  I love deciphering a “story” and finding one single inconsistency, and then watching the whole story unravel.  It’s the way my mind works.  Things either make sense.  Or, they don’t.  Details.  I’ve always been big on details.

For many months, I’ve noticed my own cognitive challenges and I began searching high and low for any information I could find.  There isn’t much.   We are part of the first group of “long term” survivors.  When so many of us began expressing concerns to our doctors and I’m guessing here, but when so much of our bitchin’ and moanin’ had such commonality, a pattern began to emerge that was impossible for the doctors to ignore.   

Every ONE of us “drops words?”  We all have this attention deficit that never existed in our lives?  We all thrived in various forms of high pressure, switch gears in a split second type environment and we are all giant balls of confusion?  Thinking on our feet?  No problem!  And now?  Hell, we can’t even figure out how to START addressing any sort of semi-complex problem.  Where have those people gone?  We’ve fallen into some rabbit hole from which we can not climb out….. 

Fortunately, our “whining” has captured the attention of some very brilliant minds.  We are now the subjects of a global collaboration of research.  I don’t want suggestions.  I want solutions.  Before there can be a solution, the problem needs to be clearly identified.  Then, I think the next step is attempting to determine the cause of the problem.  Is it possible to solve a problem without really knowing its cause?  I don’t know the answer to that one.  Seems highly doubtful.

Awareness is huge.  We are aware.  Those of us who are told we are functioning within “normal ranges” but who know we are falling far short of our BC capabilities are acutely aware and in my case, horribly frustrated.   More frustrating than my limitations, is the non-chalance with which this had been addressed until most recently.

This is the period of time I like to think of as:  Throw everything at the wall and see what sticks.  Lots is being thrown at the wall.  Thankfully, it appears from the research standpoint, there IS a collaborative effort and most everyone working on this is now throwing stuff at the SAME wall.  When a new study is published, it references prior studies.  

Mostly, I no longer feel so alone.  I am validated when I see new information.  I know I am a part of one of the newest areas in cancer treatment.  For years, survival was the only goal.  Cancer WAS a death sentence.  In fact, I just got a newsletter from a local hospital where they note that in the 70's, the five year survival rate for all cancers was just 50%. Between 1999 and 2005, that number jumped to 68%.  Now, the tide has changed for some of us.  Breast cancer patients have benefited tremendously from the advances in screening, early diagnosis and the cocktails of drugs and the tests they do on tumor tissue to see which drugs will be most effective.  

But, they are drugs and those drugs are TOXIC.  Are there degrees of toxic?  Absolutely?  But toxic is TOXIC and I HATE HATE HATE being told “but you had such MILD chemo” ….. Really? How about this?  You sit in a chair for three hours at a clip with a needle dripping poison into your blood and then YOU can tell me about my “mild” chemo….. 

And, I especially hate the term “good cancer.”   Some of us have a better prognoses than others.  It doesn’t make the cancer a good cancer.  NO cancer is the only GOOD cancer.  I am thankful, grateful, lucky, fortunate-all of those positive adjectives.  And I do FEEL that, I DO believe that…. but a cancer diagnosis is STILL a game changer.


My logical if/then brain gets it. 

IF
Major cancer institutions believe it is essential to incorporate long term quality of life issues (including chemobrain) into treatment guidelines.....

THEN
The treatment is successful.  We are surviving.  And that’s really more important than anything else.

4 comments:

  1. Wonderful, wonderful, wonderful blog post! Hopefully soon, life and quality of life, will not be mutually exclusive. You're terrific.

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    1. Idelle,
      Thanks AGAIN for supporting me.... thanks thanks.....AND I love this: "life and quality of life not mutually exclusive" ...... That's a topic worthy of attention and a great way to express post treatment life.... It goes to so much more than just chemobrain. I think you are fabulous, too!

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  2. AnneMarie,

    This post really spoke to my heart. I, too, suffer from the cognitive and toxic effects of chemo. It was the lesser of two evils, the first one being cancer. I chose chemo, and some doctors believed me when I spoke about the toxic effects, but other docs did not.

    This is an excellent post, and thank you for writing about such issues.

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    1. Beth,

      Thank you so much for taking the time to read and especially, the extra time to comment. I did start writing and blogging hoping for validation and hoping to validate the feelings of just one other person. I agree wholeheartedly about the lesser of two evils. No looking back, either. I wouldn't change a thing about my treatment.

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