Earl Update

Hi All,
 The last few weeks have been some of the tougher ones energy and pain wise. During our last visit we got word that tumors were growing and numbers going up so in one way it was not a surprise that the energy and pain were also increasing. The pain pills have helped but caused other issues. Spending more time on the couch and more time feeling nauseous.

In spite of all of it we have been trying to stay active. Lunches with Mary Pickard, Suzi Hagen, Barbara Brooks. Visited Phyllis and Mary Margaret. Did Art on Kinne.with cousin Kim.  Went to a fund raiser called Moonstruck for Rotary Charities. Sponsored a hole in the night time golf tournament and named it Kick Cancer. If we had not already named it we would have called it Goodbye Earl!
Enjoyed visiting with Co's dad and Mary during the dinner.

Co took us on a tour of Paul Allen's Private Collection based on Nature at the Minneapolis Institute of Art.
WOW. Nancy started a pilates course. Sue says she is crazy and Nancy agrees but is still going.

The best thing we did was go to the Lynx fund raiser for breast cancer--The Roar for the Cure.  We got to meet all the team members, played foosball against Lindsay Whalen and lost royally.  Nancy got beat by Rebekkah Brunson at Four straight or Connect. Posed for funny pics with Janelle McCarvill and just generally hung out. Got a great pic with the team and we will have dinner with the
coach Cheryl Reeve someday soon.

Ok, so now the tougher news. We met with Dr. Dan on Tuesday expecting to start Trametinib. We engaged in a terrific conversation with him on what make sense. To cut to the chase we all agreed that
anything we do will not contribute to length of life and would cause possible quality of life issues. Trametinib is an unknown with pancreatic cancer and has side effects as all chemo's do. Dr. Dan is not at all convinced that Nancy would qualify for Rhode Island study which only targets the liver.
The tumors in the liver and pancreas are all growing so a liver target option again would not add to length of life and would be a tough treatment. Additionally going to Rhode Island and back and then back and forth including a month stay is not a choice we are ready to make with no paybacks expected.

So what do we do?  Live, dance and find joy in what ever is left. Say some prayers. Shed some tears Oh yea-do pilates. And be in touch with family and friends.

After the conversation and decision we both felt a sense of relief.  It took the stress and worry about what to do away for Nancy. It leaves much more room to think positively.

We will work with Health Partners home care to manage pain and other things that get in the way of dancing. Some days we will rock out and others dance from the couch.

And now an original ditty from Ms Stevie Beck that made us laugh and laugh.

Earl’s a curious appellation
For an unsavory aberration
It’s high time to nix him
Get tough, eighty-six him
And clean up this rough situation

Nancy’s one heckuva girl
A celeb, a bright light, a pearl
There’s only one change
We just have to arrange
She’s gotta torpedo that Earl!

 

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.