Thursday, July 28, 2011

SUGGESTIONS ARE GOOD, SOLUTIONS ARE BETTER

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.  Small, but definitely global and absolutely brilliant.
Unfortunately, the research seems to be in its infancy.  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. 

There are a few books that have been written about chemobrain and there are some blog entries I've found and many of those are hysterical.  When I believed my only option was “Throw in the towel,” these books helped a lot.  I have gotten some very useful suggestions with these so called “work around” solutions.  And, I've learned to stop taking this so seriously.  In fact, I've decided it's best to just laugh about it.  

Mostly, I no longer feel so alone.  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.

2 comments:

  1. Hi - I found your blog off a post you made at BreastCancer.org. I'm 1 1/2 yrs post treatment and have been going downhill ever since. I've been reading bits and pieces of your blog and am so glad to find someone out there like me. I worked a high powered, stressful job. I used to be highly organized, a researcher at heart, used to project management. Plus I'm a mommy of 3 kids. Now? My house is wreck. I can't find joy in anything I used to love. I can't read books because I lose my place. I drop words, can't think, can't concentrate. I lose focus and attention. It's a struggle to talk and stay with conversations. I just don't care anymore. They've shuffled my anti-depressants around. I take Tamoxifen daily. Chemo threw me into menopause - I was diagnosed with cancer at age 39. I know there's some direct link to the menopause/estrogen blocking Tamoxifen. I'm too scared to stop taking Tamoxifen. My prayers are with you - and me. Blessings.

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    1. I'm going over to your blog to leave a comment in case you don't pop back over here. I know I leave comments on blogs and if I don't check that "send me emails of follow ups" or whatever it says, I have no way of staying in the conversation. You have described in a few sentences what generally takes me pages to explain. Including, the "don't care anymore" feeling. You too are in my thoughts.... and now, I'm heading to your blog.....

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