Sunday, July 21, 2013

Yes- I'm Finally Posting (although I'm having some technical difficulties...)

I know it has been a very very long time since I have written on this blog.  I'm assuming that everyone who is reading this has had to look up my blog, since, for some strange reason, it has stopped forwarding my blog posts and, for the life of me, I don't know what happened.  Because it stopped sending them out, I ended up just not writing anymore because I figured that no one would actually go to the blog and it would be a waste of time.

However, I have been getting emails and calls from many folks who are concerned that they haven't heard any news. Therefore, I've decided to just go ahead and post and hopefully I'll soon figure out how to fix the automatic sending of the blog (BTW - if you know how to fix the RSS feed - please let me know!)

Ok - now that you know why it has been so long since I've posted - I'll give you brief synopsis of the latest and greatest.

Bottom line?  I'm doing great.  My latest scan from around a month ago showed 4 tumors remaining stable in size.  One even went down dramatically (from 1.7 cm to .4 cm).  There has been no spreading and no new growth.  This basically means that the treatment is working and my body is effectively keeping the cancer in check.  Would I have liked to have seen the tumors decrease even more in size (or go away)?  Absolutely.  But, I'll take these  results.  I'm able to remain on my PDL-1 treatment and enjoy my amazing life without any nasty side effects.

So - what's next?  Well, I've been approved for two more rounds of treatment by Genentech (standard for the study is 16 cycles, but my oncologists are asking that Genentech allow me to have a few more rounds to see if we can lessen/eliminate my tumors).  If Genentech says "no" then Stanford has yet another study that they want to try utilizing PDL-1 and they would inject another drug directly into my tumors.  I need to learn more about this, but Dr. Kohrt is very excited about this and is very enthusiastic about trying it out on me.    Stanford is the only cancer center in the world doing this new protocol. And - this one also has NO SIDE EFFECTS!  Have I mentioned how much I love Stanford?

I'll keep you all posted as we know more, but for now, I'm just enjoying feeling great!

I'm also loving my new job fighting for innovation in healthcare.  I get to spend every day focused on something that I truly care about.  What a gift.

I'm also getting to help causes I care about.  Just recently I was honored to speak at the American Cancer Society's annual breakfast which was focused on breakthroughs in cancer research.  It was wonderful making this speech representing both the California Healthcare Institute and as a patient who is a poster child for why it is important to fund cutting edge research.

Most importantly, I've been able to spend time with my wonderful daughters. Just two weeks ago they turned 10 and, against all odds, I'm here to celebrate with them.

As we see the young ladies they've become, Pat and I are both incredibly proud that they are our children.  Living with cancer has made them loving and empathetic.  They have weathered some rough times, but have come out stronger in the end.

There's much more I could write about, but I think I've covered the basics.  Hopefully, I've eased any concerns that any of you had about my well- being and I'll try to blog more often (and if anyone can help me fix my RSS feed, I'd be so grateful).

I hope that all of you are having a glorious summer and living life to its fullest.

Ellie needs help with a puzzle, so I've gotta run....