The Latest on My Journey

I just realized that it has been a very very long time since I’ve written on the blog.    I have been busy enjoying life and this beautiful summer but I shouldn't have forgotten about you, my wonderful friends. 

So – here is my update on the past couple of months….

The girls got home from cancer camp (Camp Kesem).  They had a FABULOUS time.  What a wonderful place.  They are already looking forward to next year.   Following the camp, they were asked to participate in the Livestrong bike race (based out of Davis) to ride on the back of a pedi-bike and wave at the crowd.  They loved it!  While there, they got to meet Lance Armstrong’s Chief of Staff and talk with him about Prop 29.  What a thrill!  Morgan invited us to go down to Austin to meet with the team at Livestrong…..so stay tuned for that adventure.

As for the latest on my health stuff – we are in a holding pattern right now, waiting to see if I get to be part of the study that I had referenced earlier (PDL-1).  Dr. Fisher (George) very much wants me to be one of the 13 people to participate, but now it’s up to Genentech.   Since my initial discussion with George about the study, Genentech threw a curve ball at us – they realized that there are certain tumor types that do better with this new protocol.  Therefore, in an attempt to get the best possible results, they are only going to accept patients whose tumors are tested and they deem eligible.   This new requirement then created a back and forth between Stanford and Genentech as to who would do the testing – but that seems to be cleared up now and Genentech has my tissue samples in hand.  I am on pins and needles to see if I’ll be eligible.  As of this morning, still no word….

So – if I’m in and things go smoothly (I was told by Stanford that they are testing the whole system out on me), I will begin the PDL-1 protocol in about 6 weeks.  I still don’t know what it will entail, but it’s supposed to be MUCH easier than chemo.  How great is that??!!

If I don’t get to be a part of the study, George also outlined 3 other potential studies that may be coming down the pike that we will look at (although they’re not yet ready for prime time like PDL-1).  One of the 3 potential studies is CD-47.  When I heard this, I told George that this was the study that was going to cure me since my lucky number is 47 (Pomona College grads will appreciate this).  George then told me that since CD-47 has only been tested on 3 monkeys that it will be awhile until I get to try it and we should focus on a trial that is a little more ready to go….

In the meantime, I’m still on my Avastin/Xeloda chemo protocol.  The good news is that my CEA (tumor marker) continues to go down.  Just a week ago it dropped from 3.7 to 3.2.  This is a very good sign that chemo continues to beat down the cancer.  Dr. Smith (Garrett) told me that with most patients, there’s about a 50% chance that the chemo will actually decrease the tumors, but with me our batting average has been 100%.  Each time I go on chemo, it decreases my tumor activity.  The cancer seems to come back each time that I’m off of chemo.  The good news is that we believe that with chemo we can keep the tumors in check for a long long time while we wait for scientists to make more discoveries.  Hurry up scientists!

Many of you are aware,that I decided to take some time off of work to focus on healing while the legislature is out of session.   So over the past few weeks, we took the girls to Hawaii (which was a spectacular experience) and following our Hawaii vacation I have spent the past couple of weeks doing all of the projects that I had put off for months.  Now it’s time for healing.  I’ve started my yoga practice and even tried to meditate (although I fell asleep, so I have a long ways to go). 

I will be returning to work on August 13^th.   In the next two weeks I will continue to focus on efforts to heal my body and soul.  My goal is to set up healthy practices that I can continue once I get back into the grind of work.  Studies have shown that stress only contributes to cancer growth, so I will be doing everything possible to manage my stress going forward.

One final note – although we all thought that the fight for Prop 29 was over, you may have noticed that there has been a recount going on in LA County.   Today we will find out the results of that recount.  So – my fingers and toes are crossed that we may see an upset.  Of course, should that be the case, I have no doubt that Big Tobacco will fight it.  But – it would be fun to watch them sweat…

Please keep me in your prayers.  And, not to be too greedy, but if you could direct your prayers to getting me in the PDL-1 study, I would most appreciate it…