Wednesday, July 12, 2017

Latest on Kay

I'm back to posting on this family blog because once again we have news that we want to get out to friends about Kay's cancer that she and I just don't have the energy to pass on personally to all of our supporters, friends, and loved ones.  You are all in our thoughts and prayers, and we very much need and want your continued prayers for comfort, peace and good response to therapy.
After 8 years and 2+ months of fighting ovarian cancer, incredibly successfully much of the time, the cancer has seemed to enter an accelerated phase where after a 4 1/2 year remission at least 4 different treatment attempts have failed to stop its progression more than transiently.
Kay, Jean and I met with Dr. Elizabeth Swisher today at U. W. and it was not difficult to read her emotions on her face.  Dr. Swisher is usually a bundle of positive energy.  Kay once asked Dr. Swisher if she was her favorite guinea pig, having responded to her expert treatment so successfully. Dr. Swisher responded from her heart, telling Kay that she was one of her favorite people.  Today we could see a hint of sadness, of lack of good news to share, in her face and demeanor.
We have known since the first recurrence of Kay's ovarian cancer that further treatments had the expectation of knocking the cancer back, keeping it from progressing, and buying time hoping for a big breakthrough.  Even during her 4+ year remission following her third round of aggressive chemotherapy no one was bold enough to use the "cure" word. The bad news is that Kay's cancer growth has morphed into a phase where it seems to be relentlessly growing quickly. Kay is feeling more and more symptoms from the cancer, but overall most days remain good enough that she chooses to to accept further anticancer treatment.  That said, realistically we are starting to accept that treatment needs to be focused on reducing her symptoms and giving her as many days as possible where her pain, fatigue and other suffering do not outweigh the joys and happiness of life. Her physicians don't have treatment options with a very high likelihood of shrinking or even halting its growth.
That said Dr. Swisher had good suggestions.  Kay is going to try another course of chemotherapy, using a lower dose of Taxol weekly, rather than a higher dose every 3 weeks.  This may slow the growth of her tumor, or get it to regress for a while. with less side effects than a higher less frequent dosing regimen.  In addition we are hopeful that it will get rid of the ascites (peritoneal fluid in her abdomen) and pleural effusion (fluid around her lungs) that is causing bloating, abdominal pain, and shortness of breath.  We also have ideas on how to help with her nausea and fatigue, as well as her gastrointestinal difficulties under better control.
What we ask most of all of you is your continued prayers, that you try to be supportive of each other when possible and that you remember that Kay is the same Kay as always, she just has this relentless disease that makes her sick.  She will love phone calls, company and a good laugh, and maybe a good cry occasionally, but just cannot cry with each of you individually.  Kay told me that "our bucket of tears keeps running dry," and it just takes too much energy to be sad with everyone she loves.  Please prayerfully find a  way to treat Kay normally while acknowledging that it is a hard time and that she is not well.
Our love to all of you.

Kay & Ed

Saturday, September 13, 2014

RFE Visit Two

Stay two of our RFE has been wonderful.  We were passed off from the Yeovil Club to the Frome Selwood Rotary Club on Thursday Sept 11th at midday and were blessed to have fabulous hosts again.  Patrick and Marie Cusworth are retired educators and have been extraordianrily kind and generous.  Thursday we took a guided tour of the spectacular gardens of Stourhead before lunch, and then had lunch at cafe there.  I quickly learned how to get a great pint of beer.  Let Patrick order for me.  He and I share a taste for good proper English Bitter.  Thursday night we had a great meal at home with our hosts.

Friday, after a nice breakfast at home, we visited Salisbury for a guided tour of town by Val Atkinson.  She is a "Blue-Badge" guide and was a wealth of information.  We had a very quick look at the cathedral which has a famously high spire before lunch at the Oxbow Inn..

Then we were off to a surprise stop at a bird refuge..  We had close views of Great-crested grebe and watched a flock of about 35 Northern Lapwings circle the lakes looking for a place to land before flying away. From there we drove to get nice looks at Stonehenge from an overlook known to our local guides We were able to avoid lines and waits and still get really nice views.  Last night we went to dinner at an upscale pub with our whole exchange group and hosts.  After that we returned to finish off the great deserts from Marie's dinner the night prior.  It was far better than the menu at the pub looked for "pudding."
Today Patrick planned yet more personalized fun.  We went to visit Lacock, an ancient town where the "inventor of modern photography" Fox Talbot lived and visited the museum, the abbey, and walked around the town.

From there we went to the surprise Patrick had been taunting us about for 2 days.  We drove to the home of David Waters who has spent his last 20+ years trying to reintroduce the Great Bustard to England.  The Great Bustard is the largest flying bird in the world, and the bird with the greatest sexual dimorphism.  Males can be 5x the size as females.  He keeps two birds with injured wings at his home, but has over many years tried to bring fertilized eggs back to their prior range in England and reestablish a viable breeding population.

They were hunted to exterpation in Great Britain by trophy hunters in the 1800's.  It was quite wonderful to meet him, see his passion and pick his brain.  Then after coming home for dinner we went to Bath to the theater One Man Two Guvnors'.  

This was the final Bath showing of a traditional British Comedy and was exceptional.  Many thanks to our hosts for such a great stay in Frome.  Tomorrow we are off to meet our next host family and visit the Crewkerne area.  We just finished a nice facetime visit with Jean, and are off to sleep.

Thursday, September 11, 2014

Welcome from Somerset, England.  Kay and I are now nearly 2 weeks into our European holiday and are resting before our sendoff barbecue outing with the Rotary Club of Yeovil, but first let's back up to the start of our adventure.
Kay and I caught a non-stop flight from Seatac to Heathrow, London arriving at 6:30 AM on Friday August 29th.  We figured out train and underground to our hotel and dropped our luggage off before roaming around Kensington Gardens and Hyde Park while awaiting our room at 2 PM.  We birded the park, had lunch at the garden cafe and generally tried to stay awake and enjoy ourselves before getting back to our room for a nap.  That evening we just went to dinner and crashed for a wonderful 12 hour sleep.

Saturday was an art day visiting the Saatchi Gallery in the morning and enjoying an incredible outdoor food market in the square near there and then off to the Tate Modern in the afternoon.   At the Saatchi we found spectacular modern art shows and a wonderful space. At the Tate we saw two shows and the permanent collection there; the Mattise Cutout show was good but Malevich show was more impressive.  In room were hundreds of sculptures of ants made of two casts of human skulls and wooden twigs.

Sunday we relaxed before catching an EasyJet (misnamed not really easy at all) to Nice, France and were met at the airport by Martyn Hammond, an English friend from Boston, England we met on our last Rotary Friendship Exchange (RFE). Martyn and Lesley have a vacation place in Biot just a few miles from Cannes and Nice on the Cote d'Azur. Our stay there was spectacular.

Rather than explain day by day I'll outline a typical day.   Up late between 9-11 AM.  A relaxed breakfast at home then off to explore a nearby spot (Nice, Cannes, etc.) where we usually had a walk around, lunch with wine and great food, then a bit more exploration.  Returning home by 4-5 PM we had a swim in the pool, laid out on pool-side lounges with a gin & tonic, and read or napped for a couple of hours. Next was a long relaxed dinner at home. This was often a "light" dinner by our hosts description, but included "nibbles" (homemade croutons with olive spread, hummus and vegetables) and the local wine specialty (pronounced spe-see-al-i-tee) Rose. Then we would have salad with yummy local ingredients and a spread of meats.  Later we'd have cheese and bread followed by "pudding" (any type of desert) then espresso. Wine was consumed throughout the courses. Dinner usually finished sometime after 10:30-11PM and we got off to bed about midnight. Repeat day after day. Exceptions were a wonderful evening meal out at an upscale restaurant for my birthday dinner and a larger fish meal made from a locally caught fish donated by the motorcycle driver who crashed into our car the day prior.  Overall it would  be hard to have a more enjoyable or more relaxing stay on the French riviera.
EasyJet back to England early Saturday and we went to a comedy Jeeves and Wooster Sat night, the National Gallery on Sunday, and drinks and snacks with Ashley and Aaron Sunday evening before meeting our RFE group Sunday night. We enjoyed the Saturday excitement at both Picadilly and Trafalgar squares Sunday afternoon.

Monday we caught a train to Yeovil Station and have been on our RFE for 3 days now.  On a RFE five Rotary Clubs from one district host several couples from different clubs in another district for 3 days each then later the exchange reverses.  Our exchange is with Rotary District 1200 in Somerset County England.  Their contingency visited District 5020 on Vancouver Island and South Puget Sound area in June.  We are visiting them now.
Monday the Yeovil Club host families met us with US and Canadian flags of welcome at the train station and we went to Lanes for a drink on the garden lawn and a traditional English fish & chips lunch.  We went home with Mike and Sue Philips to rest at their stone village farmhouse before joining hour host club at The Lord Nelson Pub at Norton-sub-Hamdon for a skittles match and dinner.

Skittles in Somerset County is a local favorite pub game a sort of bowling with three imperfectly round wooden bowling balls, 9 heavy wooden pins aligned in a diamond shape so that it is very possible to roll the ball in slots between the pins without hitting any at all.  We made two teams of about 13 members each and each turn consisted of three balls bowled at the pins.  Although theoretically possible to get a score of 27 with 9 each ball a score of >5 was good.  A score of 0 was more common than a score of 9.  Spouses were put on opposite teams and Kay's team did not  win.  :.)
Tuesday we traveled to Lyme Regis on the Dorset Coast. This is a popular summer beach spot where we walked on the "Cobb" and I got to do a bit of birding.  We enjoyed the beach-side town, the shops, and lunch at the Pilot House. Tuesday night we attended a weekly Rotary Club of Yeovil meeting with spouses and gave our first power-point presentation about ourselves and our clubs to our hosts.  It went pretty well and it was nice to meet many of our host club members.
Wednesday we visited a small village Ilminser after leaving a bit early for an extra visit with our host family to Ham Hill.  Ham Hill is where the quarry that supplies all the "hamstone" for local building is mined.  The mine is owned by a Royal family member and leased by a mining company.  The ocre colored limestone from this mine is the default stone for building in Somerset, and is considered both especially attractive and easy to work with for building. We met for lunch at Montacute House and did a house tour of this large country Elizabethan era (1500's) home and gardens.  After a short rest we met the club for dinner at the farm of Patrick Palmer to visit his family farm, Bower Hinton Farm, for a hayride and barbecue.  This was a great last night with  the Yeovil club and a last chance to see some of the members.  The deserts were especially spectacular.
Tomorrow we are off to meet our next host family from the Frome Selwood Rotary Club  at Stourhead Inn where we will have lunch and tour the inn in the afternoon.
Hope all is well back home.  We are having a great trip so  far.  Expect it to continue to be terrific.

Sunday, May 4, 2014

Birdathon 2014

Thanks to any and all Tahoma Audubon Society supporters who have are plan to contribute in support of my 2014 birdathon effort to raise funds for the educational and conservation efforts of TAS.  From 3:48 PM on Friday May 2 until missing our last chance at Chestnut-backed chickadee while sharing a Bud light at my kitchen table to stay out of the afternoon rain at 3:48 Saturday afternoon Ryan Weise and I chased species from Ocean Shores to Thurston and Pierce counties while getting our highest ever total of 127 species. 
Weather mostly cooperated until the last hour or so Saturday, and tides at the coast were helpful.  We started at the Oyhut Game Range at Ocean shores with Rufous hummingbird (hyperlinks are to Cornell Lab Bird Photos) our first species as we walked into the tideflats.  The best bird there was a single Long-billed curlew.  As the 9+ foot high tide receded we found the rock-loving shorebirds, Ruddy and Black turnstones and Surfbird at the back end of the jetty along with two early Heermann’s gulls. We were surprised at the numbers of Rhinoceros auclkets (120) and Common murres (20) off the jetty, and found the expected salt water birds. Driving the open beach for a couple of miles explained where the numbers of shorebirds were, as we found thousands, including huge numbers, maybe 1000+ Semipalmated plovers.  At Bowerman basin in Hoquiam we found the Great Horned Owlets still on the nest platform where they had made the local newspaper for the Gray’s Harbor Shorebird Festival the weekend prior. The Barn owl was at it’s expected silo on Wenzel Slough Rd as the Wilson’s snipe winnowed all around us.
After a brief sleep in our own beds we met and started the day at Niszually NWR where ducks, warblers, tanagers, and a calling American Bittern posed for digiscoped iPhone photos,

bringing our list to 102 for the trip by 8AM.  We forged ahead to get a House Wren at the Mountain View Cemetery marsh in Lakewood, added a few species at Ft. Steilacom Park, and headed for Titlow Beach.  The highlight there was 7 Marbled Murrelets in their brown “marbled” brown plumage swimming not too far off the beach.  Bushtits and a drumming Downy Woodpecker brought our list to near 120 and we knew we’d get one at a time from there on.  The rest of the day we chased “stake-out” birds, adding the American Dipper at the Carbon River bridge in Orting, American Kestrel on its usual wire on Hwy 162, and  Hutton’s vireo at the Spanaway Marsh. 
We knew we had near 125 species but trying to e-bird, keep a list, drive and bird had our record keeping a bit iffy.  After a good night sleep this morning I audited our e-bird lists, and we say 127 species for the  trip.  As it seems always the trip was as notable for the birds we missed as the ones we got.  No Brewer’s blackbird, Chestnut-backed chickadee, Turkey vulture, Evening grosbeak or Pine Siskin.  This makes us excited about future trips and ways to find even more.  Still a great trip. You can contribute at if you want to support TAS.  Good birding.

Ed Pullen 

Wednesday, August 21, 2013

The Good Times Keep Rolling

Kay had her quarterly follow up visit with Dr. McCrosky today, and got really great results on her CA-125 tumor marker testing, a really great 25.  This was even better than we had hoped.  Kay is now just over a year after her last course of radiation therapy, and has been taking the curcumin for the last 4 months.  At her last visit we were really pleased that her CA-125 was down from 70 to the low 50’s, and were hoping for not much of an increase this time.  The 50%+ drop in the number was great news.  We don’t really know what to think of this.  Is it because the rising CA-125  after finishing her radiation was really a result of post-radiation inflammation rather than returning cancer?  Is the curcumin a strong anti- cancer drug in Kay’s case?  Whatever the reason, we are joyful and grateful for the results.
We’ve been having a great summer, the vacation to France, a visit to the Maine Pullen clan following a visit from Morgan, our cousin/niece, and then last week a trip with Ron and Linda Bahr to Glacier National Park.  This doctor’s visit result puts a cherry on top of what has been a wonderful summer so far. 
Jean is settling in at her new job at Nordstrom’s as a financial analyst, Kay continues to enjoy her retirement, and I am still enjoying work along with lots of vacation.  Our love goes out to all who rejoice in these great results with us.  Enjoy the rest of the summer.

Ed & Kay

Wednesday, May 8, 2013

Best News in a Long Time

Kay has been in the hopeful waiting mode for a few months with her ovarian cancer.  She finished the three-stage surgery --> chemotherapy --> radiation therapy regimen we had hoped could possibly cure her cancer about a year ago, but discouragingly her CA-125 tumor marker started to rise steadily within a few months. After several consultation and a lot of thought we decided in agreement with both her local oncologist and the Seattle Cancer Care Alliance consulting oncologist to delay further treatment until Kay either started to feel ill-effects of the cancer or until there was demonstrable cancer progression on CT scans or other imaging modalities.  Her CA-125 steadily climbed from about 10 to 27 and 3 months ago to about 70.  (upper normal is 30)  Her doubling time was about 45 days for this marker.  On this projectile we were hoping for slowed growth in the number, maybe something less than 150-200 would have been on the good side of expectations.  Kay kept a positive outlook, feeling greatful for the year off therapy, but the expectation of starting treatment and its potential side effects was hanging over her head.

Some of you may have seen a crowd-sourcing post on my medical blog Crowd Source Help Requested:  Curcumin - Turmeric for Ovarian Cancer.  Kay started the supplement Curcumin C3 about 3 weeks ago in hopes that it might slow the progression of her cancer.  Today when she saw Dr. McCrosky to hear the results of the CA-125 drawn yeasterday she was flabbergasted to hear that it has DECREASED from 70 to 50.  They rechecked this to see if it was a lab error, but the repeat was 55.  So for some reason, ? curcumin response? Kay's ovarian cancer tumor marker that has been so discouragingly accurate and predictable in the past has dropped instead of increasing as expected. 

Kay continues to feel really good  She is working hard in her garden, and it looks great.  We are all grateful that she feels strong and is enjoying this hard work.  Her energy is near normal, and we both are really excited about not needing to recheck the CA-125 for another 3 months.  Having the summer off treatment and feeling strong and well is a blessing we had hoped for but not really dared to expect.  

We do have lots of fun planned. We are vacationing in France for the first half of June.  We have a vacation to visit the Pullens in Maine in July and hope to soak up the predictably wonderful sunshine here in WA for the rest of the summer.  Three months of fun, sun and no chemo is really exciting. 

Join us in prayers of thanks for the gift of this respite from therapy, for continued regression or at least lack of progression of Kay's cancer, and for joy and fun in this coming summer. 

Thursday, April 25, 2013

3-Month Update

As many of you know we found out that Kay's ovarian cancer seemed to be recurring at her follow up visits after finishing her surgery-chemo-radiation therapy regimen last year, and she had her 3-month follow up visit with Dr. McCroskey last Thursday.  The news is decidedly mixed.  The good news is that Kay continues to feel well and life is good.  Some of her local friends threw her a party for her 59th birthday and they went to a ceramics painting place and painted a set of marine-theme plates.  We also had a family party in Seattle and she had a sleep-over with Jean and Brett at Jean's place. The medical news is just OK.  Her tumor marker, the CA-125 continues to rise, from 30 about 3 months ago, to 72 now.  This unfortunately confirms that her cancer is growing, but not terribly rapidly.  She is going to get a CT scan soon to look for any measurable bulk of tumor, but the plan for now is to carry on, live our lives and recheck the tests in 3 months again.  This will give her another period of time without chemo and the attendent side-effects.
At that time there is a good chance she will need to go on treatment to keep the cancer from spreading, and there are some not-too-intolerably-difficult options.  Most likely is seeing if an oral PARP inhibitor prevents works.  Other options may include a tumor-immunization trial being done at the University of Pennsylvania. We will learn more about the options as the time for treatment approaches.  For now it's time to live as normally as possible and cherish time off treatment.
This is all pretty much in the mid-range of our expectations, not great news, but not a big setback either.  We are committed to living fully and normally