Thursday, January 4, 2018

New Year News on Kay's Status

As we enter the new year Kay and I look back on the last 8 2/3 years of living with cancer as time we had not expected, but are grateful to have lived and loved together.  Although there have been challenging periods, most of Kay’s days/weeks/months/years since her diagnosis have been lived comfortably and fully.  We are especially thankful for our family and friends.  From the beginning when the prognosis was grim, through her three major courses of chemotherapy and surgeries, in the 4+ years remission off treatment, and in the last year of sometimes frustratingly minimally effective treatments you have been there for us.  Sometimes it has been a phone call or letter, and sometimes a date for tea or lunch.  Sometimes a visit, a trip just together or with friends or family, and sometimes prayers we have palpably felt supporting us. Everyone’s love has been there for us without fail.
Now things are looking like we are nearing the end of effective treatment options for Kay’s ovarian cancer.  At a recent visit she told Rob McCrosky, her oncologist, that she felt like the time was approaching when her cancer was going to take over.  Kay has asked both Rob and Elizabeth Swisher this question many times, whether she was near the end.  Always the reply was certainly not, and that there were effective treatments ahead. This time Rob honestly told Kay that he agreed that the time of holding the cancer back may be past.
In the last year Kay has gone through numerous types of treatments. She has tried experimental studies with immunotherapy, as well as new and established types of chemotherapy, and none have proved effective for any prolonged period of time.  For 8 years Kay was a chemotherapy superstar, tolerating treatments well and avoiding complications.  This year has been different.  Kay had little response to treatments, then she had the bowel perforation complication from Avastin.  Since then the cancer has progressed despite continued Taxol chemotherapy, and Kay is battling a partial bowel obstruction which is  causing unacceptable symptoms when she tries to eat much at all.  Although Kay is not ready to give up hope of some more time with palliative chemotherapy, we understand the options are not promising.
We are going to take the next few weeks to see how the cancer responds to a bit of additional chemotherapy.  Last week Kay received the first dose of Topotecan, a new drug for her, that she will get as weekly infusions.   Although we are hopeful that it will be effective, the odds are not in her favor.  If as is most likely these treatments are not effective in stalling the progression of the cancer, Kay and I plan to work together to figure out the best way to live her remaining time as enjoyably and fully as is possible.
The good news today was that despite having to get new insurance when Regence dropped everyone on their individual plans, and having limited options available due to “market uncertainty” our new carrier, Kaiser, agreed to let Kay keep seeing Dr. McCrosky for 6 more months to allow transition to their system.  We are going to not worry about things more than 6 months ahead right now, and are grateful for that much of a reprieve.
We hope you all had a Merry Christmas, wish you a Happy New Year.  Keep the prayers for Kay going and live 2018 with vigor and joy.    

Sunday, December 24, 2017

Merry Christmas.

For the Pullen family of Washington 2017 has been a very eventful year.  We continue to be blessed with great friends and family, and many life changes.
Among the biggest changes for us is that Kay and I moved from our home of 30 years in Puyallup to a condominium in Old Town Tacoma.  Most of our time here has been living in a major renovation, and today we are sitting watching the water from a couch in our living room for the first time in over a month. We look forward to living here in the middle of most of what’s happening in Tacoma, easy walks to many places including the Ruston Way waterfront parks.  I saw my first of the year Sabine’s gull with my spotting scope from the living room.  A nice “yard” bird.
Brett continues to work on his home in the McKinley District of Tacoma, and I’ve been having fun working with him at times.  Who’d have thought that we would learn how to lay hardwood floors and tile floors and walls (mostly Brett on this).  Brett has also progressed in his soccer refereeing and is now one of the top high school refs in the area, doing lot’s of high level playoff games, and this year got his college certification. He did lots of local college games too and is enjoying the challenge and exercise.
Jean has moved to Costa Rica.  She travelled extensively for much of 2016 and the first half of this year, before coming home for a very nice 3-month visit home in the summer.  Her partner Allen joined her for the last half of the visit.  In September they left for Puerto Viejo de Talamanca, CR where they have been living since, exploring options for developing a permaculture farm and lifestyle there.
Kay and I have travelled to Florida for a trip to the Dry Tortugas and to visit Bill and Carol in April.  Kay got 12 ABA lifers and Ed 3 on the trip, and we really enjoyed the visit at Bill and Carols, where Carol and Kay set up their studio in the Florida Room while Bill and I biked, walked, the beach, and visited. In June of us visited the SoCal Colmars. Scott arranged an Airbnb in Fullerton, Jean, Brett, Kay and me, and Scott and Erin’s family stayed there while Ken and Keith stayed nearby.  We had three consecutive celebrations.  First was Fay’s fabulous retrospective show at Fullerton College, where we all marveled at her body of work, partied, and told stories.  

Next was a graduation party for Mic (from the University of California at Santa Barbara) and Caroline from Fullerton High School.  We celebrated their success and loved the party at Mary and Jim’s house.  Last was Fay and Vince’s 40th wedding anniversary. They renewed their vows, and we had a great celebration in their back yard.  In October Kay and I attended the wedding of Morgan in Unity, ME.  It was a really great wedding set in Morgan and Kendall’s back yard.  The fall foliage was a great backdrop.  We had a fun but whirlwind trip scheduled between Kay’s treatments.
The year has been somewhat of a struggle with Kay’s health, and we are blessed that she has survived over 8 ½ years since her diagnosis.  I’ll post an update on that soon, but this is a letter of joy and celebration so not here.
A highlight of the year was giving much of our art collection to a fund raiser event called Art Beat's Cancer.  We put this on with the tremendous help of Kay's Celebration Lutheran friends at the Bird Cage in Kirkland.  The event raised $15,000. to support Ovarian cancer research at U.W. by Kay's U.W. oncologist Dr. Elizabeth Swisher. It was also really fun, and since then we've had the joy of seeing some or our art being enjoyed in friends homes.  The generosity and support from everyone in this event was overwhelming. 

May your holiday season be joyous, your new year filled with joy and wonder, and may our love for all of you be received and returned in full.

Friday, December 1, 2017

Homeward Bound

Kay has been in the hospital at Good Sam in Puyallup since Tuesday for fluid and nutritional support while we have waited for her bowel to begin to function again.  The initial CT scan was felt to show a bowel blockage, but when a tube was placed through her nose to drain her stomach very little drainage happened.  This led to reevaluating whether there is a mechanical blockage, or maybe just a dysfunction of the small bowel related to medications including chemotherapy and the cancer in the abdominal cavity.  For the last 24 hours Kay has been able to drink clear fluids without much trouble, and today especially has been drinking well.  For lunch she had her diet advanced to “full liquids” (who would think of mashed potato and gravy as a liquid) and she is enjoying eating again.  No pain or problems so far, and the hope is that if she does well this afternoon we might go home tonight or maybe in the morning.

The future from there is less clear, but the first step is to go home and tolerate eating, regain some strength, and then figure out what to do from there. Thanks to everyone for your prayers and help.  Now to get in the Christmas spirit.