Patty Update

Sorry for the delay, we'd hoped to get this out yesterday.

We met with the oncology team yesterday (same two doctors Dale had last year).  The mass in Patty's right lung is a recurrence of the endometrial cancer she beat in 2005.  It is unknown how long the tumor has been there, but the doc thought it was likely a slow-growing tumor that has probably been there awhile.  Although surgery is not possible, and there is no cure given the size/location, there are options for therapy and our worse fears were not confirmed.  The doctor was talking about initial treatment going until and perhaps beyond the holidays.  While still awful and terrible and messed up beyond belief, we are grateful for the blessing of time.

On October 1st Patty will have the first of 4-6 chemotherapy treatments (combination of carboplatin/taxol) which are done once every three weeks.  It's a 5-hour in-clinic ordeal taking the chemo, but a friend and snacks can come along for the ride.  We do the first three treatments and then another CT scan to decide if the next three sessions will happen.  Apparently it's usually most unpleasant for 2-3 days after each treatment, with fatigue, nausea etc. lingering sometimes for up to a week.  Just about the time you start to feel totally normal again, you go back for another round.  

The goal of the chemo is to extend and improve the quality of life.  Chemo is the first choice, but after the initial round of treatment, depending on Patty's response, there are other options including anti-estrogen therapies (tumor has an estrogen receptor), as well as radiation.  If the initial response to chemotherapy goes well, it can be repeated.  The taxol is pretty intense and requires close monitoring for blood chemistry impacts, anemia, etc.  

It's hard to say much else right now, except we're all just going along one day at a time.  There was a nice week at the beach with friends and visitors, and the elevator condo was done on time.  Last night was the last night Patty will have broken sleep from attending to dad's sanitation all night long, as each kid is taking a weekend sleepover/care night with Dale, and today we arranged night aides for the other four nights.

By next week sometime we plan to have a few people calling around to solicit help with meals and other stuff, and will post an online calendar of who's doing what when, once that's organized.  We are very grateful for all the offers of help, and apologies if we have not gotten back to everybody personally, but it has been overwhelming and hard to know where to start with things.  Jon Grenfel, Dick and Diane Saulsbury, George and Annis Bleeke, Sarah Rowley, Stephanie Oliver, and Mabsie Walters have been helping out a lot the last couple weeks (thank you!).  The community at Grace Episcopal has also been a treasure once again, and we will take them up on their offers of delivered meals very soon.  

In other news, Megan and Jeremy got nailed by a teenager on Highway 101 in Newport last weekend and rolled/totaled the Ford Escape, but miraculously and thankfully they are both just fine.  That was basically the best thing to happen around here in weeks.  Nobody liked that car anyway and now Patty gets to buy a new one.  We are also blessed to be a family with a good sense of humor.  Yay for the little things!  ;)

Mostly we are happy to know there is a path forward for treatment, and look forward to Autumn and another holiday season with family and friends.  We will let you know how things are going with the treatment when we have news.  

Patty enjoys getting text messages and we are anticipating more normalcy and less drama in the coming weeks.  Trips and a family retreat are being considered, and Patty's getting a cute new daybed.  As always, thanks for the prayers and good thoughts, and we send all our love to you and yours.

Best,

m

-- 

Patty

Walhoods 9.1.15 (Patty & Dale)

Not feeling particularly writerly at the moment, but there is news, and Patty asked me to send out a note.

Dad is doing quite well, and been stable now for many months.  He needs daily care and help with getting around, but is otherwise perky, eating well, enjoying good company and food, and coming off the end of a summer with lots of quality time at the beach.  

Unfortunately, we got some really bad news about mom today, which is the subject of this message.  Maybe sit down if you're not doing so already.

Patty had been complaining this year about chest pain, which we all thought was related to doing so much physical lifting and other strenuous activity while caring for Dale.  There was actually an earlier diagnosis for the chest pain, which turned out to be wrong.  More recently when the pain persisted, we did another round of tests including an x-ray.  Patty got a call from her primary care doctor at the beach last week with some scary news about the x-ray, and today we met with a new doctor (pulmonologist) to get the news.

The x-ray and two other tests done in the past week show a large cancerous mass in her right chest, which appears to have started in the lungs but has now 'eroded' and metastasized into the rib cage, chest wall muscles and lymph nodes.  We won't get the diagnosis/prognosis officially until our appointment with the oncology team on September 17th (biopsy was done today).  The pulmonologist was careful to avoid a diagnosis, but guesses it is round #2 of the endometrial cancer Patty had successfully treated ten years ago.  It is unlikely that surgery will be an option (no good 'margins'), but we are expecting treatment options involving radiation and perhaps chemotherapy in an attempt to arrest/stop the growth.  

Patty is very concerned about quality of life, and not up for a debilitating knock-you-down treatment (especially if it's heavy-duty chemo).

Sorry to just drop the bomb like that, but we are all in a state of shock and there's no easy way.  It's way too much to bite off all at once.  Patty has been the primary caregiver for Dale, as well as managing the Georgie stuff (97 years old!) for 1.5 years now.  Those of you who know this family well know it's a matriarchy, and I don't think any of us know what we're supposed to do without Patty running the show.  It's unimaginable, really.

The family is going to the beach from September 7th - 16th while the elevator at the condo is out of commission, with other caregivers/friends already signed up to join us.  There won't be much else to share between now and our oncology appointment on the 17th, after which we'll send out another update, perhaps with options for support and meals, etc.  We are covered for the moment with caregiving, food, etc.

All our love to you and yours, any prayers and good thoughts headed are way appreciated.

Mark (+ Patty, Jim, Megan, Dale)

Annual Report

It has now been over a year since Dale's diagnosis and surgery.  A year since we were told Dale would be lucky to live six months.  This has been a year of huge change in our lives and a year we have learned (and are still learning) to live with our "new normal".  Things with Dale's cancer have been quite stable for several months.  We recently went back to the oncology department and will be having another MRI (first since July) in the next few weeks.

Here is a link to a recent 60 Minutes segment about GBM (Dale's cancer):

http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/

Interesting.  We did contact Duke and they called us.  Surprising.  They gave us a number to call if we determine that the cancer is growing again.  

As we both adjust to this new normal I am finding that keeping the on-going calendar on the blog is no longer working for me.  So for now I will take it down.  We are still delighted with visits and sometimes outings. Just give a call: 503 284 3184 will get us if we are at home.  Or email me.

I will not be sending out future updates as long as there are no changes. If there is any news I will share it immediately.  So don't worry if you hear nothing.

Thanks again and again to everyone for your willing hands, support, and positive thoughts and prayers.  You have all made this past difficult year possible to get through. 

Our love and continued thanks to you all!

Dale Update - 71st Birthday

Sorry it has been so long since the last update.  It has been an eventful few weeks for us.

Dale's condition continues to be relatively stable.  That is no major changes - just a gradual slowing down.  He has somewhat less energy and ability to move around and spends more and more of the time sleeping. He is still coherent and enjoys visiting and television.  We are just taking one day at a time.

This past week has been full of events. Last Saturday (March 7) brought Dale's 71st birthday which we were so grateful to be celebrating. We had a lovely eventing open house with chocolate cake and champagne. Sadly,  the day also brought the news of the death of Jim Lewis, husband of Dale's dear cousin Connie.

On Sunday we attended church and Dale sang with the choir.  Later that evening Frank Springer passed away (at age nearly 103).  He was Jimmy's grandfather and much beloved by all of our family and all who knew him.

Next, on Thursday, came my mother Georgie's 97th birthday.  We had a nice little party. Mark also got the keys and access to his exciting new home in Milwaukie.

See party picture:

The next day (Friday 13th!) brought my 71st birthday and a memorial service for Grandpa Frank.

Now I am taking a moment to reflect and catch up with our update..

Dale is needing 24/7 care.  We have help 25 or more hours a week from Jon Grenfell.  Jon spends time with Dale, helps with his care, showers , laundry and general morale.  In addition Mark, Jim and Gretchen, and Meg and Jeremy as well as friends spend time with Dale so that I can get out do do errands and keep up with some activities.

I am trying to keep up the calendar on the blog:

http://dale411.blogspot.com/

As aways we love visits and appreciate all of your kindness, thoughts and prayers.

Blessings

Patty

February Already...

It is now 10 months since Dale's  brain surgery with the initial grim prognosis.  There is no real explanation for the fact that there is still no change in Dale's condition.  Here was last month's description:

"Dale's situation remains stable.  He is able to get around well on walker and cane and is still really enjoying each day.  Some days he is very active.  Often he sleeps quite a lot.  All in all much to be thankful for."

Things remain essentially the same. Our lives have fallen into a routine. We have our spaces arranged well for Dale's comfort both in Portland and at the coast. 

Dale is still loving visits and opportunities to tell some stories.  I am working on using voice dictation to convert some of the stories to text.  Fun.

Getting together with folks for meals continues to be a nice break for us both. See the support team sign up on the blog:

http://dale411.blogspot.com/

Dale is interested in trying to make a trip to the southwest but logistics for such an undertaking seem overwhelming. We are still considering options.

In case you missed it, here is the link to the nice NPR story about Dale and lefse at Christmas time:

http://www.northcountrydaily.com/news/npr/371941681/for-norwegian-americans-christmas-cheer-is-wrapped-up-in-lefse

Keep believing in miracles and enjoying every minute.  That is what we are trying to do every day.

Much love to all of you...

Patty

Happy New Year and update #1 for 2015

Dale's situation remains stable.  He is able to get around well on walker and cane and is still really enjoying each day.  Some days he is very active.  Often he sleeps quite a lot.  All in all much to be thankful for.

We had an active and enjoyable holiday season, with some singing at Grace, a traditional family Christmas Eve with crab, nice Christmas dinner at Kennedy School with the family including Georgie and her friend Stuart.

Boxing day brought our annual family dinner with the Bleekes.  This year they brought the dinner to us and it was wonderful.

Over New Years we were able to share our place in Lincoln City with family friends (also an annual tradition we were grateful to experience again this year)

Dale seemed to enjoy it all and really likes any chance to tell some stories. It was a special treat to have some visits from out of town friends during the season as well.

A calendar to sign up for visits is posted on the blog:
http://dale411.blogspot.com/

We love company and shared meals.

Blessings and love to all:

--
Patty

Holiday Blessings and Latest Update

Could not resist.   Wishing you love and good reading in 2015!

First the update:  Dale continues on his singular path through this cancer.  He is up and around everyday, getting out to church and yoga class.  At the moment he is out for lunch with some good friends. He enjoys meals and visits with friends and is still telling lots of good stories.  Since we are no longer on hospice we have been back to visit our primary care doctor who ordered routine blood tests for Dale.  Tests came back showing all his counts have returned to normal levels.  This is more good news.

On Wednesday we went out to cut our Christmas tree at our regular spot and found a perfect one for the new space.  Still working on paring down the decorations from our big Irvington house.

A couple of weeks ago Deena Prichep, a free-lance radio journalist who lives in Portland, came to interview Megan, Jeremy, Dale and me about traditional holiday foods and specifically lefse.  Megan and Jeremy made lefse and she recorded the sounds.  Actually we had a great time talking about traditional Scandinavian foods and our memories.  She has let Megan know that the feature will air sometime this Sunday on weekend edition.  Listen for it if you have the time.  I can send out a link to it later after it airs.

We are continuing to count every day as a blessing and trying to enjoy some of our normal holiday routine.  Dale still loves to have people drop by to visit and listen to stories.  His remains positive and upbeat.  He does sleep a lot and has a good bit of confusion but thankfully no real discomfort.

Our family wishes all of you good times with family and friends this holiday season, and a blessed 2015.  

Book recommendation:  Everyone should read this! Being Mortal by Atul Gawande.  (and thanks to Paula and Sidney for telling me about it)

Again and again our gratitude to all of you for the love, support and prayers.

-- 

Patty