Saturday, December 15, 2012

choose your own adventure

Some thoughts about this disappointment before I pack up and drive the last leg of this trip.

And then I'm moving on.

This is a lose-lose situation.  I lost because I was going to have a great response to this drug (according to me.  I have had a great response to everything they have given me!)  The drug company lost because I was going to have a great response and they could have included that in their statistics.

But rules are rules.  I get it.  The FDA has to be super strict to approve the trials for the safety of the patients.  In order to conduct an experiment the variables have to be controlled.  Yes.  I realize it's tricky to be just the right kind of patient for these things. 

Down the road, I may still get this medication.  When it is approved, for example.  I have asked all the doctors when they think this could be, and they just don't know.  Years most likely.

My doctor in Utah will be opening an anti-PD1 trial here shortly, but of course I don't qualify.

And by the way, Anti-PD is short for anti-programed death.  Enough said.  It rocks.  I wanted it.  I hope hope hope it will be available to me at some point.

I was very shocked I couldn't have it now, but I am getting over it.  I drove all day by myself and stared at the window with no music, very little phone.  Just thoughts.  Most of them hopeful.  I have always thought if things get as bad as they were we could surely just do what worked last time (IPI plus temodar).  And I am thinking that is a real possibility.

It might never get that bad again though.  I think we will radiate a couple of the tumors.  See if that seals the deal here.

So much drama!  So many possible outcomes!  I keep feeling like I'm in the middle of a really intense book and I just can't stand it any more until I know what happens.  I would either skip to the end to figure it out, and then I could enjoy the in between stuff, or I would read all night.  But I can't do either.  I have to put it down each night one page at a time. 

I guess all I can do is fill those pages up with as many happy things as I can.  And trust the Author.

Sunrise at Cannon Beach yesterday
Can you guys tell I downloaded Istagram?  Watch out!  It's pretty fun.





7 comments:

  1. We love this post. You are amazing and so we believe amazing things will happen for you! We also think you should write a book:)
    Love, Savannah and Brooke

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  2. This book is going to have a happy ending. I believe that.

    So glad you're on instagram! Let's be friends!

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  3. I know things will work out and the ending to your book will be joyous. I just have that good feeling about you. You will be around for a long time. Somehow the right thing will work out. Ultimately, remember the Lord has a plan for you and it's the best one. I always have to go back to that when I get discouraged things aren't working out to MY plan...

    Love the photos. Love the happy face. Glad you're on Insta too--let's be friends! I really hope we get to meet up one day. Let's make it happen. I have a feeling we could talk for hours!

    XOXO
    Christina

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  4. Isn't Cannon Beach beautiful?!

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  5. I love this quote by Viktor Frankl and think of you:

    Just as a small fire is extinguished by the storm whereas a large fire is enhanced by it-likewise a weak faith is weakened by predicament and catastrophes whereas a strong faith is strengthened by them.

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  6. I like your closing comment: Trust the Author. Sometimes that's really hard but it is the only way to savor the book. Still praying for you!

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  7. You are such a fighter Alisa! I admire you so, so much and I haven't even met you. You inspire me. I was around your boys a little bit ago (at Vicky's house this summer-I'm one of Daija's friends) and I realized why you are fighting this cancer with all you have! Your boys are amazing and were so kind to my children. Best wishes to you and have a Merry Christmas!

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