email sent March 18, 2016

Subject: We’re Enough…
… or, Asking for It

I went to Goodyear CTCA on March 8 for routine blood work and an exam from Dr. Weiss. He reviewed my February scans with me. Three spots may have increased in size, 2 on the left side and 1 on the radiated right side. They were all under 1 cm, so they posed no great immediate concern. Even if they are growing, the growth is far slower than when I presented two summers ago. Should they continue to grow, Dr. Weiss suggested that my first option would likely be to resume the immunotherapy treatment for up to a year. It is possible that my T-cells could benefit from an extra little boost. Should that not work, three new drugs have recently received FDA market approval. (At least one of which is anti-PD-1, a close cousin to the drug I had been taking.) Each one might suit me. Plus, more new drugs are nearing FDA market clearance. I’m still doing well and with so many options I’m not really concerned at this point. It still is what it is.

I also learned that my immunotherapy drug company sponsor, AstraZeneca, will be providing me a phone number to call them. (My identity is blinded to them; they just know my clinical situation.) They had told Dr. Weiss and Lisa that they wanted to make me “famous,” whatever that means. (I’m probably good with it as long as it’s not a posthumous honor.) I’m not interested in becoming famous, but I am very interested in spreading what I’ve learned. And it would be extremely nice to receive the assurance of uninterrupted follow up and/or treatment at Goodyear so that I could remain in “active treatment” and thus avoid Medicare issues. (Hey, come on, I’m not above shameless bargaining when my life is at stake.) And, now that I think about it, famous would be okay if it meant flying us to Bora Bora first class for a few weeks vacation. Dreams, ya gotta have dreams.

That’s it for the clinical update. Now, for a couple quotes I learned earlier this month…
“Substitute curiosity for knowledge.” Anon. (Shared by my dental hygienist as she was probing me.) In other words, instead of being sure about your opinion, ask and probe for more information. She also wondered aloud why goodness and love weren’t discussed more openly.
About the same time I found an article by Deepak Chopra in which he wrote, “Coincidences are not accidents but signals from the universe which can guide us toward our true destiny.” He went on to add, “The key is to pay attention and inquire.” All right, already. I get it.
Excerpted from http://www.beliefnet.com/Wellness/2003/10/Coincidences-Clues-From-The-Universe-By-Deepak-Chopra.aspx?p=4 (I recommend the entire four page article.)

And also this month a great friend suggested that I listen to two exceptional TED talks from Brené Brown: “The power of vulnerability” and “Listening to shame.”

The topics sound dry and deadly… they’re anything but. Dr. Brown is quite entertaining and convincing. Her research results astounded her, they completely contradicted her academic precepts and methods.
She had this to say about vulnerability: “… probably the most important, is to believe that we’re enough. Because when we work from a place, I believe, that says, ‘I’m enough’ … then we stop screaming and start listening, we’re kinder and gentler to the people around us, and we’re kinder and gentler to ourselves.”
Her take on connections especially resonated with me. “Shame is the fear of disconnection: Is there something about me that, if other people know it or see it, that I won’t be worthy of connection?” I was finishing writing the short story that I mentioned in my last email that happens to be entitled, Connections. After discussing the plot, my friend recommended the TED talks, which subsequently influenced the tale. It’s difficult to convey how so many events and discussions, i.e., connections, over the last few weeks both guided forward while at the same time manifested the plot. I’ve never been so consumed by anything I’ve ever written before. I was enchanted by how it revealed itself to me. I never knew what turn it would take next until I felt it was the right time to continue writing, which occurred with increasing frequency as it neared completion.
The story can be viewed or downloaded at
http://jamesdlewis.com/shortstories/connections.html.
It contains an addendum that describes how to create a healing room.

I’ll leave you with this thought… It’s not so much what you decide, but rather where your decision comes from. If it originated in your heart, it can’t be wrong.

With love, gratitude and wonder,
Jim

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