We've named my cancer Earl

Between Japan (Japan blog to follow soon) and BC we had a great visit with the Rohdes, in town for a wedding.  When ever we are with them it is like putting on an old pair of slippers, comfortable and warm.  We went to dinner at the Heartland in downtown St Paul and then enjoyed the evening together at home.

Lucky for us we got to go to Mayne Island BC to be at our house and with our friends Jan and Irma.  We had a great trip with lots of rest and relaxation as well as:  doing the "Diva" puzzle (we discovered Irma was a closeted puzzle addict), Mayne Island Fall Fair parade, walks, annual general meeting with all the land owners, fun times with Marilyn the dog, dinner with Peter and Gisele at their house and at the Groove with Lynda, Jan and Irma.  The lighthouse at sunset was peaceful and pretty, we enjoyed the community gardens where Nancy walked the seashell labyrinth, ferry rides are always fun even with a delay and we watched lots of the Olympics.  The best part, homemade peach pie and chocolate zucchini cake--thank you Irm!! Nancy's acupuncture and massage were delightful and totally relaxing.  In Vancouver we got to see Jan and Irma's new apartment and have coffee with Sandy and Linda.  Traveling is good but hard, it felt nice to be home.  PS, you might not have recognized any with all that hair!!


Nancy has been struggling with back pain for two months and finally found out she had two ribs out of alignment.  Putting  them back in during a massage helped.  Now Dr Dan thinks the remaining pain  is from the cancer so there have pain pills for that.  We met with him today--increased CEA, pain and increased liver protein all have him thinking now is the time to act.  First step, CT scan to be sure something else is not causing the pain. The Foundation One report finally came back with a mutation found in melanoma so there is a drug I can take to target that--Trametinib. They called my insurance and coverage needs prior authorization--but it is not made for pancreatic cancer so Dr. Dan is skeptical.  The drug company may want to help so they can broaden their claim for effectiveness in other cancers.  If not our next trip budgets all go to pills--$12,000/ month till it no loner works which you don't know for at least 2-3 months.  Scott found a trial in Rhode Island that changes your t-cells (CAR-T) and reinserts them into the liver to create targets out of the tumors and hopefully stimulates the body to attack and shrink the tumors.  Dr. Dan liked that but is concerned that it would be two months before we could get it started.  I will call them tomorrow to iron out a possible timeline. This would involve a month long stay in Providence with a trip or two prior to that for screening and t-cell harvesting. Dr. Dan is also getting more info on a trial that has a center in Seattle.  So there are some possibilities out there.  My MSI, which Mayo asked about, was normal so Mayo trial is not a feasible option right now.

Dr Dan called while we were on the way to the Lynx game (we won!!).  He was checking on my pain and the pain pills but then reported on the CT results.  As he had expected the tumors are active and have grown.  I asked if they had grown a lot or somewhat.  Answer, somewhat.  I like that but also there are new tumors, I don't like that.  The earliest I could begin screening in Rhode Island is October 4, then if I am eligible the very earliest a treatment could start is October 31, after they change and grow the t-cells.  I think Dr Dan is worried about that timeline.  He may consider giving me Trametinib soon which I could stay on as long s it works and then consider the trail, or use it for sa designated time snd switch to the trial.  I would have to be off the medication fir four weeks before t-cell collection.  We will touch base on Tuesday to figure out the best next step and timing.  Needless to say ww were sad and a few tears were shed.  This feels like a big kink in my 5 year plan.  But we continue to believe that we must live each day with joy, dancing, and love, so that is what we are doing.  Do a little dance for both of us whenever the thought comes through your mind.  Thanks

 For fun since we have been home Nancy had lunch with Kim Koeppen prior to Hamline year starting, we celebrated Sue's birthday with dinner with Mary and Co and Jewish theater production--a one woman show that was fantastic, we had lunch with Suzi Hagen, both got massages and Nancy got an extra half hour massage today.  To top it all off we went to see the Dixie Chicks at the State Fair with Kim and Lin.   Parked close by at Steve Jongewaard's house--thank you, went to the creative arts and fine arts buildings then may our way to the grandstand stopping for a london broil with cheese sandwich (nothing on a stick) and Sweet Martha's chocolate chip cookies.

Arrived in time to see the second opening act--Vintage Trouble--which was very good, upbeat and entertaining.  It was a beautiful night and the Dixie were great fun   Musically talented, full of energy and entertaining as well.  You may have noticed my cancer is now named Earl--one of their songs is called Goodbye Earl with a line "Earl has to die". We think that is true of Nancy's cancer so now we can sing Goodbye Earl. The night ended with fireworks-who doesn't love fireworks.

We got the Escher puzzle set up again to give it another try....it is a tough one.