Last Dance and Start of a New Journey

It has been one incredible journey but today, 11-11-16 at 8:26, the time came to end this one and start a new journey. Nancy saw most places on earth so now is the time to look among the stars. This journey requires Nancy to leave me in body but she will stay with me in my heart and soul forever. But lets not get too far ahead.....
The last few weeks as Earl continued to rage Nancy  refused to let him win the battle of attitude.

Mary and Susan

Dancing Pants from M&S

Cousin Jan

The house was full of love and affection.  Calls and visits from family & friends. Mary and Susan, Kim, Kim & Lin. Saturday past and doorbell rang. Surprise, Cousin Jan from Chicago to spend the day. Even as Nancy grew weaker she remained the Captain on this journey with Sue a willing first mate.  Each day she climbed up stairs to go to bed and  down in the morning. Our new couch was comfortable and dammed if she wasn't going to get to fully use it. She fought each day to eat a little something. Main stays were graham crackers and milk or jello but she did her best to try something when I cooked it.  Election coming up so we went to early vote.

Kim

Voted

Last Friday when she walked upstairs it was clear no more trips would be in order. And no more food. But no hospital bed for her. She and Jessie took to our bed where she would spend the final week in comfort with her cat. Jessie stayed by her side day and night. And she still managed to get in a few orders and quips. One morning as I was telling her she had meds to take she looked at me and said call 911. I immediately was worried and said whats wrong. She said she needed to summon the police because she had a drug pusher in her house. That I was but she did not suffer from pain.
Hospice visits made sure we had everything we needed both on a physical and mental basis. A nurse and a counselor visited regularly. And of course what was she worried about-me!  That is the captain for you.
Nancy took great comfort in healing touch. Rev Joanie, you are Saint Reverend Joanie. Thank you.

Tuesday morning when she woke up she asked who won the election. Told her it was too early as people were just now voting. Never did tell her the results as she would have been crushed. I am!!!!

Speaking of Saints, here comes brother Scott. The last week was a hard week for all of us. Scotts help and support allowed us to stay home and pass the way she wanted. Even more important Nancy loved him so much and to have him near her was comforting.  Forever grateful.

Nancy made the choice to donate her remains to the University of Minnesota for research. Once again she was dedicated to education. Go gophers. And she fulfilled one last promise to me today. They started digging up and removing the pool. She promised she would take care of it and she did.
The U carefully took her away and now the house echoes with an emptiness. My heart will heal because I promised her I would make sure it did and knowing how much you all cared for her is like medicine to me.

One of our friends Marc shared this with me today and it is perfect. Nancy and I promised to connect each time we looked at the stars. I share it with you.

There are stars up above, so far away we only see their light long, long after the star itself is gone.  And so it is with people that we loved - their memories keep shining ever brightly though their time with us is done.  But the stars that light up the darkest night, these are the lights that guide us.  As we live our days, these are the ways we remember.   

 

Travel safe Ms Nancy. I love you.

Mayne Island, BC, 2016

This is the obituary that will be in the Minneapolis Star-Tribune.

Dr. Nancy Shaw Desmond,  Professor Emerita, Hamline University  passed away at home 11-11-16 at the age 62 of after a courageous fight with pancreatic cancer. Proceeded in death by her mother Ann, father Richard and sister Kerrin.  She is survived by her wife Sue Albrecht, brother Scott (Debbie Spurling)  nephew and niece Scott Wertz (Leslie) and Jamie Wildermuth (Tim), Casey (Jessica) , Drew and Will Desmond, great nephews Brien and Jason, god daughter Lauren and all the Aunts, cousins, Albrechts and great friends far and wide.  And her cat Jessie. Nancy was born and raised in New Jersey, graduated  from the University of Oregon and spent a few years working at a Quaker Camp in Vermont. Nancy’s love for children led her to seek out a career in teaching . She came to Minnesota enrolling in the University of Minnesota and became a true Minnesotan earning several degrees from the University of Minnesota and Mankato. Nancy loved to travel the world, photography, the theater,  Lynx games, and volunteering. She could fix just about everything from computers to machines to people problems. She was kind and generous and had the gentlest of souls; she will be missed. Her wish was that no memorial be held. Memorials can be made to the Minnesota Jewish Theater Company PO Box16155,  St Paul, MN 55116. 

The New Normal

Hi everyone. It has been awhile. We are getting used to a new routine at home. New medicines, nurse visits, and new couch and chair to add to the hospice recliner. Nancy needed a different couch to rest better. She says naps are more comfortable.

Days are much shorter. Nancy gets up later and very slowly. Still dressing daily but it takes lots of effort. Then down the stairs with Sue guiding the way. Ahhh, breakfast. What would one do with out graham crackers and milk, medicines and shots. Little apple juice or boost. Then its time for a nap or a little dance before a nap.
Somedays lunch does not happen as breakfast is not finished until lunch. Somedays it does. Ahhh graham crackers and milk. Flexibility is important in this house.
Dinner we try to eat a bit of veggies and meat. If recommended portion size is the size of a fist we are at 3/4 of a fist but still eating. Gooooooo Nancy!  More medicine.
Evening is a bit of tv and then up to bed between 8-9. More medicine.

The good news on the medicine is it does manage the pain and mood swings very well.  No troubles sleeping. Now who knew that pooping would be a big event in our lives. Sad Sad Sad but we still laugh at it all and celebrate each time!

Enough. On to the really fun stuff. We did get out for a little ride to look at fall colors. Quite beautiful.


We also got out for flu shots. Not beautiful.  But the hot chocolate treat at Caribou after was delicious.
We had a massage. Nancy had healing touch done.  Sue represented us serving at Loaves and Fishes

Most important was we voted. Went to the government center on a warm and sunny day. Its over for us. Now Sue says to the 80 million callers, Thanks, we voted and take our names off your list.
Less than two weeks and it really is over.

We have many  had special visitors. Nephew Scott and new wife Leslie came the weekend after their wedding. Since we could not make it to the wedding  where Nancy was supposed to be a first dance with Scott the sweet hearts brought the dance to us. It was special to watch and brought tears to Sue and Leslie.
By the way we did attend the wedding via FaceTime thanks to Tim Wildermuth. It was great.






We have enjoyed the company of Jill and Miriam (Phoenix) who always fill the house with laugher.
Leslie ( NY), Nancy's friend from high school filled the house with good memories.
Toni (here) gave us big hugs. She will be  heading to CA soon.
Sally and Steve from Florida. Lots of great chatting about where they should settle in retirement. We voted Italy.
Kae and Char brought flowers and more great memories.



 Lynx lost so no championship this year. Next year is around the corner. Go Lynx

So remember celebrate each day and know that you are in our hearts.
Nancy and Sue
 PS:
Dance!

How Quickly Things Change!

We left off talking about the decision we made to stop treatment or trials. Still pretty active until then and the plan was to stay that way. Just stop treatments. Little did we know that Earl had other plans.
But before Earl got too carried away we managed to take in a art show with Cousin Kim on the Kinne River in River Falls WI. We put Nancy in the wheel chair and took the stroll on a beautiful warm fall day.  Stopped at the farm near Kim's to buy soup and berries and peek at the llama's. Llama's disappeared into the woods so no peeks. Next time
We also managed to  enjoy  a fund raiser for Rotary Projects. It is a night time play in the dark golf tournament called Moonstruck. We did not play but sponsored a hole in the name of Kick Cancer. Enjoyed the kick off dinner with our friends Mary and Co and Co's dad Malcolm and family. Nancy had a good dinner conversation with Malcolm who is in his late 80's but going strong.

Had a nice visit and coffee with Anne Lewis and Sue with Tim Anderson.

And then DAM EARL!

Pain was building all week and Friday I could not hold anything down. Saturday morning Sue invited
yellow Nancy for a trip to the emergency room. Nancy agreed and off they went. Nancy could not stand as pain was too great. The admitting nurse took one look at her and said Oh my, do you have something wrong with your liver. Dam Earl! Got pushed to top of list and in a room in 30 minutes.
Ultra sounds and cat scans and first pain meds. We got admitted and up to a room with the information that a possible procedure would be done as bile ducts were blocked.  They were going to try to put a stent into one of the ducts that would accept it and get things moving. Docs were nervous about the small size of stent required but were pleasantly surprised when one went in easily and bile began to immediately flow. The other duct was too far blocked to even get a small duct in but the liver usually adjusts. This should keep things flowing.
The gastro Doc was a Minnesota graduate and a budding artist. He drew pictures on the board in the room to explain. We kept it up for days and told him he should not leave his day job for art-even though we used the picture often to explain the situation.

Nancy's  brother Scott flew in to hold her hand. He stayed for 10 days and flew from here to Philly for Scott and Leslie wedding on the shore. We decided earlier that in spite of all our positive thoughts Earl had won this round and it would be too hard to go.

But in spite of  Earl we attend via FaceTime. A beautiful bride, a handsome groom and a beautiful ceremony. Thanks Tim Wildermuth nephew in law and cameraman extraordinaire. And what handsome attendants Brien and Jason were!

So we got ahead of ourselves. We came home on Tuesday Sept 20 with Hospice care. Their job is to make living more comfortable by managing pain and daily routines. They have delivered a recliner and all the meds we need. Joyce is our nurse who comes weekly but is available if we need more.
Gotten meds adjusted so pain is much less. Sleeping more but still up and about with regularity.
Days of going out for to eat or meet folks are pretty much done but enjoying people stopping here for an hour or so.

Whoops almost  forgot. One of our goals was to get to a Lynx playoff game. We put Earl in the trunk and made it to Xcel for Game 1 of the semis. The staff at the arena made it easy with our wheel chair to get to our seats. Lynx pounded Phoenix and went on to sweep the semi's. Sunday is game 1 of the finals. We are going to try.
And special thanks to Sue Mitchell for the surprise of Nancy's name in lights at the arena.


The sign says "Welcome to Tonights Game. Nancy Desmond Friends and Family"







Nancy's cousin Richard and his daughter Julia came from out west to visit last weekend. It was fun chatting about family memories. Thanks Richard and Julia.
Special niece Jami also came from Philly bringing lots of love and warmth and energy. Love you Jami.
Nancy has been carrying around a slab of wood about 4 ft long and several inches thick for 40 plus years. It was her grand fathers. Occasionally Sue would ask so what are you going to do with that wood. Several months ago it was decided a bench was a good idea. Master woodworker Jim Casurella was engaged and he and Nancy sorted out many ideas. Nancy kinda lost her ability to finish the project so Jim agreed to do so. Nancy and Sue found legs on the internet.
Saturday Jim arrived with a finished piece of beautiful wood. Under the watchful eyes of Nancy and Deb and their grandkids the legs were attached and thus the birth of a gorgeous bench.
It is in the living room and is admired daily.

This weekend the bride and groom are coming here to dance since we could not go there for the wedding. Many of you know that we asked on Facebook for songs that folks love to make up a playlist to dance to. Well, put on your dancing shoes cause we have 99 songs and over 6 hours of music. As varied as our friends and family they bring us joy and smiles.

Love to you all and we will think of you as we dance.
Nancy and Sue

PS Earl's gotta Die!

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.

Mayo Clinic

Scott and I went down to Mayo last night to easily make my 7:00 checkin time at Mayo.  Sue stayed home as we decided Scott would ask better questions and listen better and had lots of information about trials.  We had a low key night walking a bit to get the lay of the land, eating at Chester's and then walking along the river.  7:20 blood test and 8:00 CT test.  Process slowed as they tried to figure out if they could use my port for the CT.  Turns out the card I carry did not have enough info and eventually we went with an IV.  I was a wreck since my last IV experience was awful but I decided it was Mayo and they should be good at it.  Chelsea was great, both in trying to figure out the info they needed for the port so I will have it in the future and in putting in the IV.  After that I was only a little nervous about the dye going in but Jason was great and all went well.  We were hungry by the time we got to breakfast in the small Eisenberg building cafeteria   Bought sandwiches and cookies (we are related) for lunch and went back to  the room to rest.

Walk and picnic lunch before 1:20 oncologist appt.  Dodged the rain and arrived early.  Met with a physicians assistant first who said the doc would be in to talk about the diagnosis and treatment.  Treatment sounded good.  Turned out he had three options-trials rather than treatment.  An immunology trial for which I have to have a positive MSI to participate.  Hopefully the Foundation one test Dr Dan has ordered includes this so I could know soon.  The other is an agent added to gemcitibine which I did with Dr Dan first.  Third option wait and see.  The CT did not show any radiological growth, a good thing but is active bio-chemically as shown by the CEA.  This matches Dr Dan's "the cancer is active, we just don't know in what ways."  CT showed that.  Mayo Dr Yoon was patient, forthcoming, protective when Scott's questions were too direct--making sure I was comfortable and wanted the answer before continuing.  He thinks immunology is the way too go, there just are not a lot of pancreatic cancer trials with that.  He also cautioned about using two agents as some of the second agents have severe side effects.  He is cautious about quality of life, and trials that are far away with difficult regime timetables.  He is much like Dr Dan in thinking about what is important and where we are now, different words and manner but re-affirming what Dr Dan has been saying.  At this point success in trials is measured by adding three months lifespan.  Some immunology trials for 2-15% can add more but they don't know who, why or when,  and he could not point to any.  His best hope is the MSI trial if I am eligible, then if foundation one turns up anything interesting.  I think he was at a draw between the other and waiting/watching.  No silver bullet, no secret that Dan does not know about but glad I went.  He said, as everyone does, that I look great and am otherwise healthy.  I keep holding on to that and in spite of reality I told him I wanted to live 5-10 years, just not sure how to do that!

Next Dan appointment is Monday the 15th.  Next trip--Vancouver and Mayne Island Tuesday the 16th!

Cancer Update

Hi there. Thought we would give you a little update. The blog posted before our Japan trip gave you a the status on where we were with Nancy’s cancer. Numbers up and re use of same treatment pretty well eliminated.
So we are at the what is next place. 

We returned a week ago today from Japan. A nice little trip. Right before we left we decided that now would be a good time to see what was cooking at Mayo Clinic. We had talked with Dr Dan about this some time ago and we all had decided to hold it in our back pocket for later. We think later is now so we called and talked to them before we left. We left them with info and headed off on the trip. Just before coming home we got a message from Mayo Clinic in Rochester saying to call as they would accept Nancy for a consult. We did that and have an appointment for August 9. Have no idea where this will take us but here we go. Nancy’s brother Scott is going with her as he is such a great question asker and listener. Sue’s idea. She will impatiently wait for a report when they return
Dr Dan is looking for alternative treatments or trials and we hope to hear something from him this week.
Most likely if alternatives are found they will be elsewhere and we will have to go there for treatment. He also sent a sample of her tumor off to a group that is looking at it for what types of cancer cells are in her tumor in hopes that it might give some clues as to next treatment types that would be recommended.

So thats where we are right now. Kinda limbo. Nancy handles it with grace and Sue hates limbo!!!!!!!

Nancy was a trooper in Japan. Long days and hot and humid but she held up very well. The group we traveled with was very nice and supportive. They could not believe what she was doing and how well. Me too!!! We will do a blog posting but wanted this to get out so you are not wondering what is happening.

So the plan was to travel to Mayne Island in BC to our home  in late August. As of last night we still do not know if we will . Our focus needs to be on whats next and getting it going. So lets say we are still thinking about it and if it works that we can, we will. 
Terri (our niece) and her daughter Lauren and friend are here from Milwaukee. Lauren is grown up. They drove her car (we bought it for her) up to show us and to do a visit to the University of Minnesota as a possible school for Lauren.
And then there was the all day shopping to the mall. Terri and Nancy and I went to an art fair and home.

So Japan blog and pics soon.