First Post

Thanks for signing up to be part the Team.

This journey will take the effort and commitment of an amazing team headed by my wife Sue, sons Jason and Zach, my doctors and dear friends. 

I appreciate the love and support thus far from all of you.  Your prayers and kind words have lifted  my soul to new heights.

Through this site I hope to be able to share the journey with you.  Feel free to post your thoughts and any information you believe will be helpful. 

I have decided to use this private blog instead of other public platforms like Facebook.

Please DO NOT post any information about this journey to FB or other public sites.  
Thank you.

For those of you that are learning about this for the first time....here's how the story begins:

This is a letter I wrote to Byrdie Pompan on Thursday, April 30^th, one day before by second biopsy procedure…..

On Sunday night 3-22 at 10:30 pm the General Manager of my restaurant, The Stand in Century City received an email from Greg Alpert, location manager from Warner TV, containing a request to film a scene from the pilot episode of “The Advocate” at our site on Saturday April 4th.  At the very same moment I was being administered a morphine drip at UCLA hospital for what was presumed to be a recurring episode of pain relating to chronic kidney stones.  It wasn’t until I awoke at home the next day and read my discharge report that I remembered the ER doctor telling me that I needed to immediately see my personal physician as the CT scan they performed on me showed a “growth on my pancreas, a legion at a lymph node and two spots in my liver.  At that moment, I instinctively withheld this information from loved ones and went through the steps of speaking with my physician who immediately sought and received approval from my insurance company to get a CT Scan with contrast on April 1st.  At the same time, Greg reached out to me personally with his request to film at our site.  We receive requests of this nature from all of our locations monthly and usually reject them immediately, but for some reason, I kept talking to Greg.  He told me your personal story, but frankly at the time it only connected with me in some abstract manner as I was still “undiagnosed” a little in denial and hadn’t begun openly discussing my “condition” with friends or family.  I agreed to the filming and your story stuck in my mind.

Then on April 1^st I went to Hoag Hospital for my CT Scan.  That day changed my life forever.  I got home and received a phone call from my doctor at exactly 5:05 PM.  I know this time, because every moment thereafter is burned into my memory and has played back in slow motion in my mind a thousand times since.  He asked if I could please sit down as this was “not going to be a good conversation”.  He proceeded to tell me that the Radiologist has preliminarily diagnosed my condition as “suspicious for a neuro-endocrine pancreatic tumor, which has metastasized to lymph nodes and liver”.  Even I knew that this meant stage 4 cancer.  When asked what my prognosis was, he told me that if lucky, I might have lymphoma or “the good kind of pancreatic cancer….the one Steve Jobs had and lived with for nearly ten years”.  If I don’t get lucky, I am probably looking at less than six months to live.  No other options were discussed and he referred me to my new Oncologist and I was left believing that my time left was extremely limited.  He told me that the next steps included a new blood test and a tumor biopsy which was later scheduled for Thursday April 9^th.  Well, you can probably guess what it was like for the next few weeks.  Telling my wife, two adult sons and a few trusted friends that I most likely have pancreatic cancer was the hardest thing I’ve ever done.  Watching their pain with this burden was dreadful for me.  Watching their courage and strength was inspiring and heartwarming in a way I’ve never before experienced.   In the middle of this the filming of your pilot at The Stand in Century City went off without a hitch. 

The blood tests results came back first, before the biopsy was even performed, without a trace of cancer in my CA-19 tumor panel.  Good news, but not in any way conclusive according to my doctor.  The “biopsy will tell” he stated.  We waited over the weekend from Thursday the 9^th until Monday at exactly 11:45 am when I received an email from my doctor with the results.  My boys were with me when I printed the results to read with them.  We huddled as we read and when we got to the part that said…”no abnormal cells have been found”, we broke down and cried for 15 minutes without moving from our three-way embrace. 

I have now been diagnosed with chronic pancreatitis.  A condition I will need to deal with, but should not shorten my life significantly.  But I am changed permanently.  I tell friends and loved ones that I would not wish what I went through on my worst enemy.  But I would love to be able to break off a small piece of what I experienced those 14 days and give it painlessly to my loved ones in the hope that armed with this experience they would see life just a little differently, as I now do.  It’s still all so fresh and I haven’t really assimilated my experience completely, but my hope is that I never change back.  Not that I was a bad person, because I wasn’t.  Not that my life was less than full, because it wasn’t that either.  But because there is an altered perception of what is important to me; what really matters, who really matters and I don’t want to lose it.  I’m sure you understand. 

In the end I’m writing you because I thought the connection between your story and mine was far too strange to ignore.   The work you do is important.  The story your TV show has the potential to share with people is important.  I hope you get a chance to share it with millions. 

Me…. I’ve never been happier or more in love with my life, family and friends and in a weird way I have a preliminary mis-diagnosis to thank.

All the best,

Epilogue

On Friday I had a second biopsy procedure called an EUS or endoscopy with ultrasound at Hoag Hospital in Newport Beach.  Immediately after the procedure Dr. Nguyen broke the news to us that she found pancreatic cancer, not chronic pancreatitis.  This was confirmed by the biopsy results on Wednesday, May 6^th.

So starts the journey!