The C Word – A New Battle Day 82 - New friends with something in common

We spent most of this weekend at events held for others with PMP cancer.  Last night was a social event for dinner at Massaro and Santos in Monterey.  While we thought this event would bring together more of the “locals”, we discovered that people came from all over the U.S., Canada and even Australia and China.  We mingled with other patients and caregivers, listened to one another’s stories, learned some things and laughed together as well.

We learned how PMP is handled in China and a little bit about their health care system.  I sat next to someone who has been on TPN for nearly a year and also has a GI bag.  We talked to people who have are part of the “one and done” team – those who had one surgery and are living cancer free (some may also have had chemo as part of their regiment).  And we talked to people who have undergone one or more rounds of chemo.  Some people are long term survivors (10 or more years), more than half were five years or under.  There was mention of a few that we’d never met who lost their battle in recent months or years.

Today we spent the day at the Bayonet and Blackhorse golf club in Seaside hearing from an array of speakers.  They included a surgeon specialist from UC San Diego where they have just started looking into genome therapy for this disease, from the company that has built the machines that do the genome testing to determine specific mutations for all sorts of cancers and diseases, from Foundation Medical which does genome testing (and was the organization where George’s samples were sent for testing).  We also heard from both PMP Pals Network that held this event and ACPMP (appendix cancer/pseudomyxoma peritonei).  PMP pals network is a group that support those going through this cancer journey with supportive people, connecting people to services and so on.  ACPMP is a fundraising arm that support research specific to these rare cancers as well as offering support to those going through PMP treatment. 

The last speaker was named Anna Renault, a 67 year old woman who has been diagnosed and treated for 9 different cancers as well as had many other illnesss and “bad things” happen to her over the past 50 years.  She still has quite a zest for life and talked about the importance of having faith and hope, how to find the good in even the worst of situations.  I sat there and marveled at this walking miracle as she proclaimed that God has allowed her to live this long in spite of all the turmoil and spoke of the various ways she has used this “extra time” in her life to write books, mentor others, and even do an internet talk show.  She encouraged others in the room to use extra time on earth to use their talents to do something positive.  I commented to George that he has nothing to complain about in comparison to her - - specifically talking about the times when George comments, “the hits keep coming, when do we catch a break”.  Anna was inspirational to say the least. 

During the day we were able to connect with a couple from San Jose as well as a very newly diagnosed man from Fremont and hope to keep in touch more frequently.  We met up with our friend Pam and her husband who were part of the gathering for PMP that I set up this past July. 

While we did not hear much “new” today, we were able to have things we’d heard about explained in more detail.  Some good, some not.  But overall the theme was “do not give up the fight”.  Even if the odds are not very good for some treatments, they are better than doing nothing.  We were also encouraged that science and technology are making some huge advances overall.  While we are part of a “rare cancer” group, eventually there may be ways to detect and determine better targeted therapies for cancer across the board. 

We came away from this weekend with more friends, more supporters, more things to think about as we head into our appointment with the GI Oncology doctor at Stanford tomorrow afternoon. It is likely she will have nothing new to offer us at this time, but we need to get in there and make it known that we are interested in ANY treatments that may make a difference if they hear of anything as technology makes advances. 

We are grateful for all of the people we met over the weekend and are so glad we took the time to attend this event.  We are bonded by our mutual disease and now have new resources to turn to as questions come up in our journey.