Wednesday, December 25, 2013

Good News (we hope)

 News came today (just after we opened gifts with Jessie, Matt, Amanda, and Alejandro) that the Proton Beam Therapy treatment in Philadelphia had been approved by Peter's insurance.  His "simulation" is set for next Thursday, January 2nd, and treatment will start about 10 days after that.  He, or we, will do an up-and-back for the 2nd.

We're just starting to figure out the logistics of getting to and fro, but, as we said earlier, Peter has places to stay.  I think the plan is for him to stay with his family there in the early days, and I'll mind the farm and my work here, then I'll go up once the treatment starts to take its toll on him and he'll need help.  Not sure when that will be, but we've been offered an apartment for that time.  So much good help.

Seems like we have abundant help down here, too.  Thanks to everyone who has offered to pitch in one way or another.  Feeling the abundance this Christmas Eve.

So, Merry Christmas, if you celebrate Christmas, and Happy Holidays if you don't.  Looks like a lot of New Year's Day will be in Philadelphia.


Saturday, December 21, 2013

Getting Started Again - Two Years Later in 2013

[FROM SUSAN - December 2013]

It seems like time to revive the blog.  It was in 2012 because it enabled us to let everyone know what was going on without having to tell the story over and over.  It enabled us to be with our friends and talk about other things.  When you're dealing with cancer you get might sick of talking about it.  And, as the introvert in the family the blog helped me communicate with our loving family and friends while still maintaining some quiet space.

Right now we're both feeling great and able to do everything that needs doing.  We don't need a thing, and are looking forward to time with Jessie, Matt, Amanda, and Alejandro in the next two days before they head off to visit their other families.  So here's the latest:
For a brief recap, Peter was diagnosed with esophageal cancer in 11/2011.  He began chemo and radiation in December at Duke and had surgery on March 13, 2012.  He did a short round of oral chemotherapy following surgery.
At his 6 and 12 month scans (October and April) he was declared “clean.”  By the end of 2012 was feeling almost like himself again, exercising almost every day and volunteering (or playing music) almost as often.  In mid-October 2013 we hosted Jessie and Matt’s wedding here…quite an affair!
But after the wedding a recurrent tumor was identified at his 18-month CT scan on 10/31/2013.  A follow up PET scan showed no metastases, thankfully.  Surgery is not an option, and chemotherapy, while being pushed, promises little efficacy.  We had been told that radiation was no longer an option as well.
But a focused-beam radiation was offered (by Duke) since the tumor is higher than the previously heavily radiated areas.  Peter was set up (and mapped for 2-3 hours) for this treatment and set to start 12/2, but during Thanksgiving week that option was taken off the table-- as it was deemed too risky. 
Peter feels good now and his quality of life is great.  He is able to do all of the things that give him pleasure (see above), and able to exercise and eat well. 
“Eating well” now involves a plant-based lifestyle (whole foods, mostly organic) that shows some hope for healing for people with cancer (with much better response numbers than chemotherapy).  Many people far sicker than Peter have seen cancers recede, go into remission, or disappear entirely.  Since doing additional research since the recurrence, my hope has gone up.
We signed up for the JumpStart program through Wholevana (see and I am grateful to have had someone else cooking us this wonderful food for 10 days (12/9 through 12/20).  It seemed to help Peter adjust to the dietary changes as well
Peter flew to Philadelphia on 12/18 to see a doctor there who offers a proton beam therapy, which is another kind of radiation that, to simplify, doesn’t go all the way through so is potentially less damaging to adjacent organs, tissues, and structures.  

He is waiting for word that he can be enrolled in the clinical trial there.  If so, he’ll be in treatment for 7 weeks in Philadelphia most likely starting in January.  Thankfully, Peter has family there and an offer of an apartment through some family friends.  Talk about blessings.  But that’s as far as we’ve gotten towards planning.  Just a wait and see situation and a "take things one-step-at-a-time" opportunity.

After Peter got sick in 2011 I ratcheted my work back to half-time with the Johnson Intern Program.  I am grateful for the wonderful people I work with and their generosity in giving me time off as needed both then and now.

Peter and I are thankful for all of our good friends and wonderful family who were so supportive through the 2012 ordeal.  Keep praying or shining the light or doing whatever it is you do in 2014.  And we wish you all the best in this Holiday season.

Love, Susan