Dale Update 4.29.14

This comes a day late, but Patty tasked me with sending out a few specific thanks, as we have been feeling a gratitude deficit.  We have been showered with so much love and support and help over the past month, and are all so truly grateful.  

We have been blessed with many delicious and amazing meals, and every single one has been a treat.  Special visits from friends far away have provided support that made all the difference at just the right time, including Bonnie Stanke (New Jersey) for the original hospital drama and Sarah Rowley (Sedona) as treatments began last week.  Shelley just rocked an incredibly kick-a$$ stirfry that we are still talking about.

Another special shout-out goes to Uncle Dan and Uncle Steve for those first few days at the hospital, and again to Rev. Stephen Schneider (spelled correctly this time) for his ongoing support.  Stephen's Grace Episcopal Church has generally been a real beam of light in this house over the past month.  We have gorgeous collages created from the many cards and letters Dad has received that now adorn our living room, thanks to Julie Romberg.  Sue Jensen brought beautiful flowers and carried forward a card signed by many others that still sits centered on the mantelpiece.  Such a wonderful fellowship and family at that place.

Dad is handling the radiation/chemo treatment combo very well so far, with some fatigue and treatable yeasty throat yucky stuff from the steroids but otherwise all is good.  He has been enjoying cat naps and excellent organic healthy food and smoothies every day.  Patty administers a posh daily essential oil suite of treatments that keep it groovy, including citrus essential oil with soda water at happy hour, nightly tummy rubs with a digestion-support potion, and daily frankincense under the tongue to help the chemo work better.  Dad has this hippie-ish lavender-filled floral print cotton eye sack thing that he uses for the cat naps (and fake-out cat naps where he's still listening/laughing/etc) that I covet.

We are well along in planning an awesome June family road trip to California.  Last night we made several reservations on airbnb, including an off-grid hillside home in Big Sur near the Esalen Institute, a sweet  little cottage in downtown Santa Barbara, a 1920's craftsman bungalow in San Diego (with detached casita and retro trailer), and an over-the-top midcentury modern in Rancho Mirage with the classic kidney-shaped pool.  Bam!

OK, guess that pretty much 

covers it for now, except Patty wanted to remind people of the Dale Blog, where you can still sign up for dates and food bringing and stuff:  http://dale411.blogspot.com/

All our thanks and love as always, every day is the greatest blessing.  m

The Dale: Treatment Day 2

Today was the second day of dad's high-tech radiation/chemo combo treatments, and so far so good.  Dad says it's pretty mild and complains of nothing unpleasant except a little claustrophobia during the procedure itself.  He is otherwise chipper and doing well.

Patty is managing a baroque scheduling of the daily pills, including a big cluster at the beginning and end of the day, two intermediate clusters taken with food for the steroid pills, an anti-nausea pill precisely one hour before the chemo, two (different dosage) chemo pills at home precisely one hour before the radiation appointment at 3:30, and then a quickie 3-minute trip down the road on Interstate to Kaiser.  It is a huge bonus to be so close to Kaiser's radiation oncology center, which many people deal with by destroying an entire day in the car or getting motels nearby for several weeks, etc.  NoPo rules!

Dad describes radiation as 13 unremarkable minutes in the mask/cage, with an initial 3 minutes of zap-free calibration maneuvers where the machine is checking stuff, followed by ten minutes of full-on zappage with rotating robot arms and two plastic cookie sheet shield thingies  moving around.  Apparently the only sensation during the entire robot radiation sequence is a mild pulsing in his head, along with bright blue flashes when he closes his eyes, as predicted by the radiation doctor dude. That part is kinda trippy and he smiles while describing the experience.

Anyway, everything is chugging along pretty good right now, and dad is in good spirits.  Special appreciation to all our dear friends helping out with Dale dates and yummy food and stuff, and all the amazing cards.  Keep the good thoughts coming and we'll keep the updates coming.

Go Blazers!

Mark

Our Six Week Adventure Begins

Tuesday Evening in Lincoln City

Dale and I are spending a few quiet days at our place on the Lake in Lincoln City.  Tomorrow we head back to Portland to get ready to begin (on Thursday) the six weeks of radiation/chemo combination.  

The chemo, called temozolomide (temodar) is in a pill form taken 1 hour before the targeted radiation treatment each day (Monday - Friday).  The doctors and others we know who have had this course of treatment tell us it is well tolerated by most patients, with few side-effects.  We are praying for that.

Please keep those prayers and positive thoughts coming Dale's way.  His spirits are good and so is his appetite.

Here is the link to a Dale 411 Blog  created for us by dear Debra Thomas.  All of our emails since we started are posted there.  On the right hand side you will find links to click to sign up to provide support by dropping meals by or coming by to hang out with Dale at various times.  

Thanks for all of your continued support and love.

-- 

-- 
Patty

April 14

Today was a very productive day in terms of getting our heads around what is ahead for Dad's oncology treatments.  We had a meeting with the chemo oncologist, had a good experience, and got lots of information.  Basically there is a six week program of 5 days/week with both chemo and radiation, followed by a 4-week break, followed by six months of chemotherapy only.  

After checking around and hearing stories of others who have survived well past the expected timelines with this cancer, including an aunt in North Dakota, we are hopeful about getting positive outcomes.  We feel like Dad is in good hands, but are getting a consultation and second opinion on the treatment options and issues with the UCSF Brain Cancer Center, probably the top brain cancer center in the U.S.  There is a clinical trial involving a vaccine that we are looking into, as well.  The first phase of treatment starts April 24th.

We have Dad beginning a low-sugar, high-protein, low glycemic index diet on the advice of our oncologists and several friends.  The sugar is especially bad for several reasons, so we really need to watch out for sugary stuff.  However, Dad really likes visitors, going out to lunch, and wants to see people.    

We are all anxious to get back to some semblance of a normal lifestyle, and keep things as steady and normal as we can during treatment.  We're going to have to play some things by ear, but are ready to try and organize helpers for lunch, maybe some shopping, perhaps some cleaning or yard help for Patty, outings for Dale solo, etc.  Things will fall into place once we start treatment next week, but please get in touch with Patty or I if you would like to help and we will get back to you.  Might be kind of a big chunk of time all at once on the weekends that we get back to you, but we will get back to you.

Thanks for all the good thoughts, for keeping Dale in your prayers, and for the offers of help.  We are planting summer things in the garden and thinking positive, keep the good stuff coming. 

Love you all, thank you, be well.  

-- 
Mark & Patty

April 10

Howdy Everybody,

We met with our radiation oncologist today, and really like the guy (Dr. Wynne - like that name!).  We asked lots of tough questions about the various treatment options folks have told us about (shout out to Sarah Corbett Morgan & Neeta Rowe).  We are going to meet the other half of the oncology team on Monday, but are relieved to feel a plan coming into shape. 

The cancer is a bad one, but the treatment itself is one of the most mild treatments of all the cancer treatment protocols.  Another upside is that brain cancer is not a physically painful thing to experience when it's happening to you.

We are going to start working on setting up a system for helpers and meals and dates with 'The Dale' over the weekend, probably have things running in that department in the next week or so.

It's a tough road for sure, but Dad is being a total champ.  He's going to have to cut back on the Gateau au Chocolat, ginger ale and other sugary stuff but otherwise today was a step forward.  Megan's idea is a trip to Norway for Christmas.  My friend Laura says just take trips.  Dad has mentioned Hawaii.

We are happy to be blessed with time to share experiences and make new memories with Dale.  

Thanks as always for the prayers and patience and love and cards, etc.  

Mark & Patty

Primary Care

We met with Dad's Primary Care Physician today at Kaiser to hear the results of the pathology report, ask some questions, and find out what we can about what's next.  We are devastated to report that the diagnosis IS glioblastoma, a very aggressive brain cancer.

We still have lots of questions, and have not met with the team of two oncologists.  Those appointments come over the next week, as we learn more about the choices to be made regarding treatment, comfort, lifestyle, etc.  Dad and the rest of us are still digesting.  Everything has changed.

We are full up with food in the house and support/helpers right now at least for the next several days.  Within a week or so we hope to be using a website already set up by the lovely Debra Thomas to help coordinate helpers/visits/food, etc. (please stay tuned).  Patty's cell phone is still on tilt and there's a million things that need to happen.  Thanks for your patience.

Dad is really digging the (snail mail) cards, and we are already working on ideas for a display of sorts in the house.  It would be awesome if you send him a good story, a few jokes, or whatever sentiments arise in an old school card or letter (1554 N Wygant St., Portland, OR 97217).  You can also send him a text. 

Thank you, everybody.  Go hug your people!  

Mark

Today was a much better day.

 Dearest Friends and Family,

Today was a much better day.  Dad recovered quickly from the surgery, and got moved down to a regular room from the ICU in the early afternoon.  He had a headache today, not surprisingly, but that should not last long. He was pretty zippy and more like his usual self, telling stories and cracking jokes and chatting up the hospital staff.  Ozzie and Harry got to come visit and give daddy some love.

Main thing we want to share today is that we are still in a floating/waiting place without a firm prognosis.  There is a bizarre Dr. Jekyll/Mr. Hyde aspect to the communication style of our neurosurgeon, who was Doom and Gloom right after the surgery but much more skeptical, open and positive this morning (kind of a sexist dickwad to be honest, but he's a good surgeon so we'll let it slide and move on).  Bottom line is we won't know until probably Monday at the earliest the specifics of what we are dealing with here, because we don't have the full pathology report yet (biopsy results from surgery).  Rest assured we will let you all know as soon as possible when we find out, hopefully early next week.  

Thanks especially for all the well wishes, prayers, and cards/messages.  Dad wants them all read aloud to him, and we got through a big portion of them already. I want to especially thank Rev. Steve Schneider for his support and presence at the hospital the last couple days, including pre- and post-operative prayers with dad and family.  We are a strong, tight, loving family and will get through this, in no small part thanks to all the love and prayers and white light streaming down on us from all you good people.  Many blessings, indeed.

Mark