briansereno.com

It was on this day last year - the Tuesday after Thanksgiving - that I made the decision that I credit with saving my life; a decision that I was nowhere close to making just 12 hours before it was made.  I went to bed on that Monday night looking forward to returning home, not necessarily because I thought that there was something at home for me, but because I was so disappointed (and grouchy as can be) that I thought there was nothing there for me at Duke.

We awoke early on Tuesday morning and made the short drive from the hotel to the clinic, and I slogged my way from the car, through the clinic, to the brain tumor center and into a small room that was no bigger than a prison cell but somehow fit five of us tightly around a table.  I’ve apologized profusely for my behavior that day (which included blatant yawning in the middle of conversation, though I  was tired and understandably frazzled), and I regret that I didn’t handle myself better.  At the time however, as we were being read word-for-word from the protocol script that we were instructed to read diligently the night before, I was in no mood for niceties.  My best memory of that morning was the constant underlining and highlighting of the word diarrhea (which I just consulted dictionary.com to learn how to spell, and was treated to this definition: an intestinal disorder characterized by abnormal frequency and fluidity of fecal evacuations.)  Despite my newfound maturity at times, diarrhea remains funny.

I’ve digressed, but the point is that I was in a foul mood, certain that I didn’t want to enroll in any of Duke’s protocols, and eager to go home and go to bed.  I’ll admit to being awed by Duke’s beautiful facilities, impressed by their thoroughness, appreciative of their philosophy, and mindful of the fact that most of the people I came across genuinely cared about me, despite being the cranky stranger that I was.  The social worker I met with was intelligent and edgy, giving me back some of the attitude that I projected; an effective and appreciated strategy to break the ice and the stigma that I had in my mind of social workers.  We had opinions and answers, documents and forms, packets, pamphlets and all other matter that was needed to make a decision that I thought I’d already made.  I slowly began to see the potential of enrollment, but my fear of Irinotecan outweighed everything else, until…

We asked to meet the now legendary Dr. V., the man who authored and engineered the study.  He was the man that was supposed to have all the answers.  I laid it out for him honestly.  I didn’t want to do just the standard of care (radiation and Temodar), and I loved Duke’s philosophy, but as funny as diarrhea is to say, as it’s the chief side effect of Irinotecan (though I was never affected), I didn’t think diarrhea was going to be too much fun to have.  Was I really about to skip out on Duke over my fright about the runs?  What other options did I have?  I needed help, and help came in the form of Dr. V.  He assured me that he’s “patient first” not “study first”, and that I could drop out of the study at any time with no hard feelings by Duke, and still be treated as a patient there.  Come again?, I asked.  I can quit (thinking that I could do the first part of the study that included just Avastin in conjunction with radiation/Temodar, and then drop out before Irinotecan came into the picture), and still be treated as a patient at Duke afterwards with no harm done?  Count me in, Dr. V.  I would have guessed at that point that I’d drop out of the study on the eve of my first bout with Irinotecan.  Thankfully, however, I made it through.  Like my Mom’s man Barry Manilow crooned, I made it through the rain.

I made it through the rain
I kept my world protected
I made it through the rain
I kept my point of view
I made it through the rain
And found myself respected
By the others who
Got rained on too…

…And made it through!

To all that got rained on with me, we made it through!  You’ll never know how thankful I am.

GBM