Friday, January 3, 2014

The Fuel of Hope

I recently came across a video clip of an interview with Dr. Henry Friedman, the Head Honcho at the Preston Robert Tisch Brain Tumor Center at Duke University.  Watching it brought back memories of the day about a month after my dad was diagnosed, the afternoon on which this same man called me on my cell phone to say that the team at Duke had received Dad's paperwork and had approved him to come in to their clinic for a consultation.

Knowing the outcome as I do now, it feels odd to think back on the day when that call came in with what felt like the best news of my life.  I vividly remember standing in front of my desk at work, hearing my cell phone ringing, and then seeing the North Carolina area code come through on the screen of my phone.  Like a drowning person grasping for a life preserver, I hit the button to accept the phone call and said, “Hello?  A few of my coworkers, each of whom knew that I had been anxiously waiting on that call, stopped what they were doing and stood motionless, watching my face as I listened as Dr. Friedman responded to my basic greeting by launching into a rapid-fire monologue about how we needed to get my dad in to see his team at the clinic at Duke.  I felt like it was the voice of God speaking to me; I felt like hearing that Dad had been accepted into what we’d been told was the best program for his type of brain cancer in the world was a sign that Dad was going to be ok.  The stream of words coming through the phone line sounded like a pep rally of the highest importance: “We have seen great success with the treatment for GBM that we’ve been doing in this clinical trial,” he said, and for the first time since Dad’s diagnosis I felt Hope. Friedman offered me an appointment for my dad and of course I gratefully accepted, with tears streaming down my face as I stood in the middle of my office.  I thanked him and then we said goodbye; I hung up the phone and turned around to face my coworkers, who broke out into a round of applause.  I felt like I had won the lottery.

Watching this clip, listening to the same voice talk about the horror of brain cancer coupled with the renegade Hope of his treatment plan, I feel such a mixture of emotions.  Although I spent a lot of time after my dad’s death feeling very angry that the Hope that we’d been given hadn’t panned out, I am grateful now that Dad and the rest of us were able to have that Hope for a period of time, because the thing from the video clip with which I don’t agree is the idea that the worst thing one can hear is the word Cancer.  I know now, as do others who have gone through similar situations, that the hardest thing is when the doctors don’t know what to do, when the treatments don’t work, when the Hope has to change to things like comfort and peace - and when even those things seem like a far-reach.  

We didn't actually meet with Dr. Friedman once we got to Duke; we met with some of the neuro-oncologists and other staff members there that he had trained and talked to them about his latest protocol for treatment of GBM.  We felt the support in the fight against the insurance companies as discussed in this video, and we appreciated that and the other resources we were given while we were there.  

Of course I wish that my dad could have had a "good outcome." Of course I wish that my dad could have been one of the people in this video talking about long-term survival.  Of course I wish that he could have been one of Dr. Friedman's examples of how things could go right.  But, failing that, from this vantage point I am grateful for the Hope that we were handed by this guy and his team and for the fuel that it gave us, if only for a short while.

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