Mom's Birthday

Today would have been Mom's birthday. She would have been 80 today, and we miss her. I talked to Dad and Bill as well as Morgan today and all is well back in Maine. Dad visited Mom's grave today and brought flowers. I'm so blessed that Bill and his whole family as well as the Pullens and Axtells are so supportive. Dad is going to Bill and Carol's for dinner tonight.

We are having a good summer. Kay continues to feel great, and though her CA-125 is creeping up she continues on just the PARP inhibitor and had a recent CT scan showing on demonstrable cancer back. We pray for more time off chemo to enjoy the summer and hopefully well beyond.

Summer is good, lots of weddings, parties, time together for Kay and me. Kay visited Fay last weekend and had a great visit. I had some time to be alone which was good too.

We are just about finished putting the house back in order after the flood and that feels really good.

Just trying not to fall completely out of touch.

Ed

His Friends Call him Arch

His friends call him the Arch

Last night Kay and I went to the Tacoma Dome to see Arch Bishop Desmond Tutu speak, and were awed by his words. First let me set the stage. The show started with lots of acts by local performers, some inspirational, some less so, but all building a sense of excitement and expectation. Highlights were the Washington High School Step team and Quest Crew, the winners of Americas Best Dance Crew TV show challenge. The under-program speaker was Craig Kielburger, an international youth advocate who gave an inspired talk about how he came to found Free the Children, his organization that has built 650 schools and tons of other projects since he started it with 11 other 12 year olds after reading a newspaper article about a 12 year old in Afghanistan who was murdered for his stance for children’s rights. He asked Archbishop Tutu how he should address him, and was told, “My friends just call me “Arch.”

Archbishop Tutu’s talk, appropriately was more like a sermon than a speech. He delivered it with humor, humility and incredible power. His premise was that God created all of earth without any help from man, but since man came to earth he has worked through humans to make things happen. He gave examples of Moses and the Virgin Mary as two people he asked for help who said, “Yes.”

He gave examples of seemingly small actions, like Rosa Parks, “Sitting in a bus and refusing to move,” as actions by humans to further God’s plans. He called on all of us to listen for God’s call, and to say yes. As Kielburger said about a conversation with Tutu, after Kielburger told Archbishop Tutu that he had stopped reading the paper to avoid reading about all the terror and hate in the world, Tutu admonished him as, “College boy” and suggested he see all these as opportunities from God for human intervention for positive change.

After each vignette the Archbishop described, Moses, Mary and many current stories, he curled his hands, smiled impishly, and whispered “yes” to the joy he felt about humans answering yes to God’s call to action.

I hope to keep my eyes and ears open for opportunities to answer yes to God’s calls even more after last night.

Changing subjects, on the home front Kay continues to do well. Her CA-125 remains below 10, and the PARP inhibitor therapy continues to go uneventfully. She is taking next week as a brief holiday off the treatments and we are going to New York City for fun together. You may recall that Kay and I had our courtship largely in NYC and at West Point, NY, and have lots of fond memories to enjoy there.

Jean is doing great at Ernest and Young, and Brett has graduation from Seattle University June 10^th, so we have a busy month ahead. My Dad is visiting for Brett’s graduation as is Kay’s brother Keith.

Happy Easter

We've neglected this blog for some time, and as usual no news is good news. Today with the joy and love of Easter we feel especially blessed. We had a great day today with both Jean and Brett home. They all got down from Seattle last evening and we had a really good visit. We made dyed hard boiled easter eggs for an Easter tradition.

Today we went to breakfast at church as is our usual Easter tradition, and enjoyed the 9AM service. We got to meet with Ron and Linda Bahr and two of their sons at church and for a nice visit at the house after church.

Then we all worked to put dinner together, and enjoyed our leg of lamb and fixings. After we sat around and just visited for most of the afternoon before the kids went back to Seattle. Brett is winding down his last full quarter at Seattle University. Jean is in the process of buying a condo in Seattle and both are thriving.

Kay continues in remission, and is still on the 2 weeks on, one week off routine of the PARP inhibitor infusions. So far she is having minimal side effects, just a little fatigue and feels done for the day after her infusions, but they are late in the afternoon on Mondays and Thursdays, so it's tolerable. Her last CA-125 was 7.3, the lowest so far in this cycle of treatment. We are hopeful that the PARP inhibitor will keep any recurrence attempt at bay and this will be a prolonged remission.

Back in Maine Dad is doing pretty well since Mom passed, and Bill and his whole family have been great about visiting him often and including him in their active lives. Keep all of them in your prayers, and keep praying for Kay's continued health.

May the promise of Easter sustain all of us through this year and many more to come.

Ed

Bye-Bye Anemia

Kay had more good news today at her visit with Dr McCroskey. Not only is her CA-125 staying in a good range (9.0 today) but her complete blood count showed her Hemoglobin level to be 12.7, with a normal range of 12-17. This is the first time in recent memory that Kay has not been anemic. Chemotherapy has as a major side effect suppression of the bone marrow's ability to produce blood cells, and you may recall that Kay needed a blood transfusion a few months ago when her anemia got severe. This is great news and we hope that Kay's energy level will follow her blood count to higher levels.

She also heard sad news today, on a more personal note. Kay was enrolled in the phase 1 PARP inhibitor trial along with 7 other patients. Kay found out today that she is the only one of the eight still on the PARP inhibitor. All of the others have either died, had progression of their tumors, or developed problems that made them stop the PARP inhibitor. We don't quite know what to think of this but are pleased that Kay is doing well.

Since I last posted Kay and I have been busy having as much fun as possible. We spent a great 4-day weekend in Petaluma and Sonoma visiting Ann Heatley and John 3 weekends ago, and this past weekend spent 4 days at Orcas Island staying at Jane Hostvedt's vacation home there. Both weekends were great times. In Petaluma lots of time with friends and family, and this past weekend lots of time for just Kay and me.

So far Kay is enjoying the remission, and we are praying for a long stretch of recovery and rejuvenation. Lent has been a good time to reflect on our blessings.

The family continues to thrive. Dad is doing well adjusting to live without Mom, and I'm hoping I can have him out for Brett's graduation in June. Kay and I have another vacation set for May in NYC. Back to where it all began for us.

Thanks for all your prayers and support.

Ed

On a Brief Vacation

Kay and I are in Petaluma, CA visiting Ann Heatly and her partner John, and planning on seeing some art, drinking some wine, and catching a little more sun than is available at home. Life is good.

This is Kay's week three of her treatment cycles. She just finished cycle 7 of her second course of chemo, and we're glad it's going to be the last of full chemotherapy. She has been very fatigued, and even modest physical activity has been tiring. As is the norm with Kay she just finds a way to carry on. I came home Wednesday to find her in bed with her iPad and phone working away. Just preserving energy in one way and choosing how to use the energy she has.

I suspect she is more anemic, and Monday at her doctor's visit we'll find out whether she needs another blood transfusion. Last time it gave her a huge energy boost, so we're all for it if she needs one.

Except for fatigue Kay is doing great. No major problems with chemo, her CA-125 numbers remain around 10, and we are praying for a long remission. She will be continuing to get the PARP therapy twice a week, two weeks out of each 3 week cycle, but these only take an hour or so each infusion, and should not affect her blood counts. We hope this therapy prevents any recurrence of the cancer, and that she continues to tolerate them well.

Give thanks in your prayers for Kay's remission, and for continued health. We'll do the same, and maybe add a hearty toast with some good Cabernet this weekend.

Surprise: One More Cycle

Kay went to see Dr. McCroskey Monday, and had expected to find out the results of her CA-125, discuss her phone consultation with Dr. Swisher (done from the funeral home in Oakland, ME last Friday by cell phone) who simply said go forward with the PARP infusions. This was no surprise as Dr. McCroskey had already talked with her about these issues. Instead Rob asked Kay to get one more cycle of chemo first. Her CA-125 came back unchanged at 10.4 and so Kay is now half way through her 7th cycle of her second course of chemo. Doing well as usual

The week has been busy, our first week back after 10 days in ME for me, and a week of California fun and ME mourning for Kay. I've been doing the same old things, work at the office, blogging on my health blog and staying busy. It has been fun to see Kay really energized about her work. She has been doing a project for her California high tech client Anritsu where she is creating a "new campaign that she is excited about. It's been a while since I've seen Kay as totally immersed in a crash project as this, and she seems really happy.

Louise was buried today, and Bill and Dad went to a small ceremony at the cemetery. The pastor didn't show, so Bill stepped up and did a prayer and officiated at a ceremony. He said all went great, and although everyone was sad, it makes things feel final. The burial couldn't be last week because the veterans cemetery is only open on weekdays, and everyone was in town for the funeral on Saturday.

Please continue to keep Horace (Dad) in your prayers, and of course Kay as she finished this course of chemo, continues on the PARP inhibitor, and we go about living life as fully and in the present as we can.

Ed

An Outpouring of Love

Mom's funeral was Saturday at the Oakland Methodist church that was my church home as a child, and where Mom was very active in her younger years. On Friday there was a viewing and visiting hours at the local funeral home, and it was nice to see lots of family and even more friends. Friday was a really long and hard day for Dad. I left the afternoon session early to pick up Kay, Jean and Brett in Portland, ME. We got back for the evening hours and that was really nice.

Saturday the funeral service was really nice, and afterwards we had friends and family over to Dad's house where Donna Pullen, the wive of Dad's nephew Charlie, organized food and decor and with the help of lots of others there was everything for set to celebrate Mom's life. The house was packed and even uncle Deck, Dad's older brother who struggles with mobility came and participated. It was nice to have time with family I hadn't seen in years in some cases. Lots of love shared, and especially as the crowd thinned we shared remembrances of Mom and times together. Everyone was sad, but knew Mom was better off now, and we felt blessed that Mom passed quietly and peacefully in her sleep.

Today Brett, Kay and I had a 6 AM flight out of Portland, ME. We're home, tired, and bracing for a week battling jet lag. Please keep Dad in your prayers as tomorrow is his first Valentines day alone after 59+ years of marriage. Horace we pray for rest, a manageable grief, and renewed energy and a new life after Louise.

Thanks to everyone for your support and prayers.

Ed

Kay's in CA, Ed's in ME

The good news is we're both with our Moms. Kay is in San Diego with Fay and Mary and they sound like they are making Fay's 81st birthday a great one.

The rest of the story is that my Mom is near the end of her earthly life. I'm taking the night shifts of sitting with Mom, and this leaves me lots of time to think and remember good times before Mom's last 12 or more years of fighting first multiple sclerosis and later throat cancer. Mom is resting very comfortably now, as she and we await her last breaths.

I think of years of staying at camp in the summer with Mom primarily looking after us. I feel blessed to have a Mom who while giving adequate supervision let me have free roam of the whole lake, lake side and surrounding areas. I played with friends and roamed literally miles through the woods, on the lake in our flat bottomed unsinkable and nearly untippable plank-built boat. It weighed hundreds of pounds and had a 3 horse power outboard motor that pushed it so slow that you could walk on the shore faster than it moved at full throttle. I remember Mom wishing I'd spend more time above the water than under the water swimming, but not complaining, just always keeping an eye on me.

I remember Mom saying, "If you don't have something nice to say, don't say anything at all." Advice I have regretted not heeding more than once. I remember beans and hot dogs on Saturday nights, riding with Mom several times a day as a kid going to pick up parts for the mechanics at Dad's Ford dealership in Oakland before he moved to the business to Waterville.

Mostly I remember she always just knew I could succeed even when I was not so sure. I still hold Mom and Dad as the ultimate role models of how a couple should love and cherish one another, through great times, not so great times, and recently not very good times at all. They have been truly inspirational for me. Thanks for everything Mom. One of the last things I remember Mom saying before her prolongued seizure, and subsequent drug-induced unconsciousness here at the hospital was about Dad. She just said, in few words as is her style, "He sure takes good care of me." That he has. For many years Mom sure took good care of Dad and all of us when she was healthy.

Please keep Mom in your prayers. Pray for a quick and comfortable passing. She will die without awakening it appears and although I'd like to be sure she hears us all tell her how much we love her, I'm grateful that our Lord has given her this peaceful way to pass.

Ed

More on Louise

I'm sad to say that Mom took a turn for the worse today. After a couple of days in the hospital after her seizure and diagnosis of a brain tumor where she was doing pretty well today she started to have seizures again. These began at about 9:40 this morning and she continued to seize almost continuously for over 2 hours. Despite being on phenytoin, and being given IV ativan the doctor was unable to stop the seizures.

Finally after starting a continuous infusion of IV ativan Mom stopped seizing but as a consequence is essentially unconscious. We placed her on hospice just yesterday, and now she is on IV morphine infusion as well as the IV ativan. The blessing is that she is comfortably sleeping, but the issue is that if the meds are stopped there is every reason to believe she will start the seizures again. The brain metastatic tumor is still there and not something we can help, so Mom will pass in the next few days.

Dad is coping pretty well, lots of family is here and Mom is well attended and loved, so she will pass comfortably and peacefully. Keep Dad and Mom in your prayers, and many thanks to all the SFM staff who are holding my practice together while I'm gone on short notice.

Ed

Ed's Mom Update

I got a call this morning that my Mom, Louise, had a generalized seizure. She had been doing generally but non-specifically poorly for a few days, and this morning after a visit to her doctor had a seizure at home. It happened in the midst of a major storm, and the paramedics brought her to Central Maine Medical Center in Waterville. There she was found to have a major brain tumor, most likely metastatic from her prior throat cancer, and to have the equivalent of a major stroke.

I'm going to try to get to Maine tonight and tomorrow. I have a red-eye from Seatac to Newark and on to Portland, ME. Weather allowing I'll get in tomorrow mid-morning to Portland, and to Waterville by noon or so. More likely it will be delayed by the storm, but I'll get there as soon as I can.

Please keep Louise and Horace, along with Bill in your prayers. Pray for comfort for Louise, peace for the rest.

I'll post again when I can.

Kay finishes her last course of this cycle of chemo this week, and plans to visit SoCal next week unless a funeral in ME happens instead.

Kay remains well, is upbeat and her usual incredible self.

Ed

Another Cycle Gone By

Kay finished her first cycle of chemo after our Christmas chemo holiday and all continues well. She feels fine, and has had no concerns with the blood counts. The CA-125 was a still good, at 10.3, but we're not sure how we feel about this. Last cycle her nadir was abou 6.0, and after the 5th cycle now the CA-125 has inched up from 9.3 last time to 10.3 this time. Kay's oncologist assures her that this is all good, that there are normally minor hour-to-hour variations in the values, and not to worry. We're not going to worry.

Kay's 57th birthday was last week, and we took a 4 day weekend last week. We spent Thursday night in Vancouver, BC. Weather was really miserable, cold mist and stiff breeze, but we managed to have fun. We went to Granville Island Thursday afternoon and evening, where I managed to smile was we walked through a few shops full of cha-cha before we settled into a warm seat at a brewery and tasted their beer. A good dinner topped off the evening. Home early for a warm winter night.

Friday we hit both the Vancouver Art Gallery and the Modern Art Gallery at times when they wer down for putting up new shows, so only saw one floor at the Vancouver Art Gallery. It was an interesting show of Emily Carr and 4 younger artists who emulate her works. She was an early Vancouver artist who found inspiration from the Native American art and life of the late 1800's and early 1900's. You can see her work at the link on her name above.

Friday night we visited Ron and Linda Bahr in Bellingham, and enjoyed their hospitality. Sat and Sunday we birded the Skagit and Sammish flats, and had nice visiting time together.

This weekend Kay and I go to a cancer retreat at Harmony Hills. We look forward to and dread this at the same time, but we think it will do us good to have time together focused on this battle ahead. We need to look ahead while being present at the same time. A challenge.

Jean turned 24 this week, and is doing great, as is Brett. Kay has two new business opportunities and is excited about doing good work, I continue my medical blog and am working on a new site with Brett as a great online resource for sex education. It's not ready for prime time yet, but I think it will be an authority site with more work.

Keep Kay in your prayers.

Love to all.

Ed

Kay is Doing Great

As Kay approaches the end of her 5th cycle of this second course of chemo she continues to be a chemo superstar. She will get the last PARP infusion portion of this course and take next week off. She did develop some anemia a while ago, and got a 2 unit blood transfusion, which went uneventfully and left her full of energy for our Cabos Christmas vacation. We've been back almost 2 weeks now, and all continues well. She will get at least one more course, then we are working with our oncologist to decide what if anything to do after that besides wait, have fun, and pray.

Kay's last CA-125 was down to 9.3, from 11.5 the time prior, so the downward trend continues. We pray that this PARP working with her chemo will lead to a much longer remission, maybe even a cure.

Jean has moved to an apartment in Bellevue for a short time as a sublease prior to her long engagement for her job in southern Oregon, so Kay and I are home alone again. We're jamming as much fun into life as we can. Last night we, really Kay, hosted our Rotary book club, after reading The Immortal Live of Henrietta Lacks. It was an interesting story of the HeLa cell line that has been used for most of the cell research in the last 60 years.

Brett is back to start his Senior year at Seattle University, and is doing well. He is working out a lot, having some fun, learning lots and trying to learn more about online marketing as an entrepreneurial pursuit.

DrPullen.com, my medical blog, continues to grow in viewer volume and on the search engines, and I am still having fun with writing.

Winter birding in WA is great, and I'm off to E. WA with a group this weekend, while Kay stays warm in Puyallup. The next week we are joining Ron and Linda Bahr, good friends, on a trip to Vancouver, and a weekend of birding the Skagit and Sammish flats for raptors and winter passerines. Then the next weekend off to a cancer retreat where we hope to renew and invigorate our spiritual and emotional reserves to continue the fight.

Hope this finds you all well. Keep Kay in your prayers, asking for a long remission and continued good health.