The inspiration to write the above mentioned post came from the uncertainty of my daughter and I both having a tumor disorder called Neurofibromatosis Type 1 (NF-1).  There was not anything we could do to prevent such a disorder, but there was definitely a benefit in preparing for the possibility of the worst case scenario of cancer in our future.  In our efforts to be ahead of the game, we got our daughter immediately hooked up with a geneticist and pediatric neurologist, both of which involve a 3-hour drive to attend.  Then came the insurance tango to get our daughter the appropriate genetic testing.  Two steps forward, one-step back, repeat.  Finally, we were able to appeal enough times that they agreed to do genetic testing for her, which would potentially have an impact on my diagnosis.  This is because one point of criteria to have NF-1 is to have a blood relative with the same gene mutation.  So, if she had it, then I had it.

Well, we had a twist in our story.  We were pretty much certain that she and I both had NF-1.  All signs pointed to yes.  We just needed the blood work to confirm it.  Not that we wanted to confirm it, because we’re hoping for the best, right?  It just seemed to be the inevitable.  I wasn’t wasting my time with worry, but it was certainly an item on my mind.  So, we get the call from the genetic counselor, after waiting over a month for results, to find out that she does not have the gene mutation.  The test is 95% accurate and the gene mutation is not there.  I didn’t even know how to process that.  

As happy as I was to hear the news, the only thing I could think of was, “what about the 5%?”  I’m not trying to be negative here, I just really wish I could lay this topic to rest 100% of the way versus 95% of the way.  And then the follow-up questions for my prognosis came into play, if the tumor in my optic nerve is not indicative of NF-1, then what is that tumor doing there?  Does this mean I have a greater chance of it being cancerous versus just an indicator of a tumor disorder that mostly is comprised of benign tumors?  Then, before I go supernova with panic, I pull myself back in and realize that there’s no sense in worrying, as Michael J. Fox has taught us, and all I need to do is hope for the best and prepare for the worst.  And that’s exactly what we did with our situation and will continue to do.  We hoped for a clean bill of health for our little girl and did all that we could to get ahead of the game and prepare ourselves for the worst.  In this case, we got the best case scenario, or at least 95% of the best case scenario.

::COMMERCIAL BREAK::  Before I go giving my Dad all the credit for this mantra, I should add that I found two variations on it.  The first person noted as saying it is Benjamin Disraeli, who served twice as the Primer Minister of the United Kingdom in the 1800’s.  He’s quoted as saying, “I am prepared for the worst, but hope for the best.”  Then, Maya Angelou stated in her book I Know Why the Caged Bird Sings, “Hoping for the best, prepared for the worst, and unsurprised by anything in between.”  Well, Maya, I am surprised by the in between.  I’m surprised at the confusion that I feel with the 95% in-our-favor results.  ::BACK TO YOUR REGULAR PROGRAMMING::

I am learning to find complete joy in the good news and realizing that all I need to do is prepare for the 5%.  I’m not going to dwell on the 5%, but I am going to keep up on all of my daughter’s check-ups and not shrug them off just to avoid the 3 hour drive.  I’m going to continue to be as diligent as I already have been in regards to her health and my own.  That’s all I can do.

If you have your own situation that leaves you concerned with the unknown, may I suggest as I have previously, Don’t Waste Your Time with Worry, but also don’t wallow in avoidance.  This is why we get insurance, right?  Cars break down, homes catch fire, health woes strike, etc.  We need to prepare ourselves for what may come our way.  But this is not just about insurance, obviously.  You will have trials in your life beyond matters that insurance can cover.  Hearts get broken, people lose jobs, and faith gets shaken.  We need to prepare for those worst case scenarios as well.  In these matters, you may have to get a little more creative in your preparation plans.  For myself, being a woman of faith, I pray often and read my scriptures so that I can be strong in the Gospel of Jesus Christ when challenges come my way and they will come my way.  Regardless of our situations, may we all hope for the best, prepare for the worst and be unsurprised by anything in between.

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