Thursday, September 24, 2015

Update September 24, 2015

The school year has arrived full force and with it, the challenge of teaching a new class, revamping my curriculum (I never teach the same year twice), and trying to remember not to sweat the small stuff.

After our trip to Mammoth, I contracted a respiratory infection that took a while to clear up. Christine and I figured that due to my compromised immune system, it just takes me longer to respond to antibiotics. Glad to say that I am healthy and happy.

We celebrated the end of the summer with a bonfire, wonderful friends and family at La Jolla Shores. Of course, the first day in over twenty years I spend any substantial time at the beach (aside from running and swimming), they close the beach to swimming due to a shark sighting. When we decided to have a bonfire, I immediately thought of La Jolla Shores. But because you can't reserve a fire pit, I got up at the crack of dawn and arrived at the beach at 6:00 a.m. - the 6th person there. Naturally, there are only five pits. So I just parked it on the sand next to the pit with only one "claimant" and negotiated sharing the pit. We had a blast. My friend, Joe, former Fire Chief Extraordinaire, was a bit concerned when I piled on wood to an already raging fire. I told him that it was 'cathartic' and my 'reward' for having spent 18 hours at the beach.

I had an appointment with my neurologist, Er-Kai Gao, earlier this month. My primary care physician thought that I should see Dr. Gao because I have only seen him once in four years (back when I was diagnosed in 2011). Dr. Zu has managed my TSC (ordered scans, tracked the status of the tumor in my head) since 2011, so it was good to actually sit down and meet Dr. Gao, an important member of my medical team. (See, people like me have "teams" looking after them). He conducted an EEG to assess the functionality of the neurons in my brain. After attaching something like 50 electrodes to my head, the technician subjected me to various stimuli while the computer tracked my brainwaves. These stimuli included opening and closing my eyes, flashing lights of increasing frequency, breathing in and out rapidly for 3 minutes, and 'sleeping' for about 50 minutes (which you can't actually do). I will see Gao October 19 for a follow-up.

I saw Dr. Zu on Monday, 21 September 2015. He came into the exam room all a-flutter with excitement and eagerly shared with me news of a clinical trial for a new medication that has shown much promise in the treatment of Pancreatic Neuroendocrine Tumors (PNETs). Dicerna Pharmaceutical out of Cambridge is conducting the clinical trial for DCR-MYC in Chicago and San Antonio. I have contacted the company to see if I may participate in the clinical trial. (See Overview of Clinical study HERE). Aside from the potential benefit to me, I am interested in contributing to knowledge of PNETs so that we can be one step closer to finding a cure (PNETs can be managed, but not 'cured.'). I will keep you posted. Needless to say, this news was heartening.

My blood work, weight, and other vitals all look good. I had my monthly shot of  Sandostatin, which I seem to be tolerating well.

I am appreciative of each day and vow to make each day great. Thank you for your love, friendship, and encouragement.

With much love and respect,
Andrew