Hello, Old Friends!

Brain cancer is...

 

...enjoying the return of old friends.

Look who is back in town for the winter.  Hello again, pelican pals!

We celebrated the return of the pelicans with...

....doughnuts. We've missed you, sugary sweet treats.

Hello, old friends!

"And then I painted the light."

Brain cancer is...

...appreciating autumn light.

We have taken the advice of a few Team D members who suggested that we walk at the park during daylight hours rather than in the dark.  Good thinking.

Look at the long shadows at the park today. How beautiful is the light?

The title of today's post comes from a fond memory of our 30th anniversary trip to London.

For our itinerary, we divided all the days up fairly between the two of us with historical places, art museums, engineering places, and pubs (okay, pubs and wine bars were for both of us).

In the museum realm, I was overwhelmed by the National Gallery (a story for another day).  While there, though, we saw one of Monet's famous paintings of water lilies.

Wet and Awesome (not)

Later we went to the Tate Museum of Modern Art and saw the next version of Monet's water lily paintings.

Also not awesome (unless you're looking at the painting).

What we remember is this paraphrase of Monet's quote, which captures the journey from one museum to the next (I can't find the quote online, but enjoy the London memory with me):

"First I painted the lilies.  And then I painted the light."

What a thing, to keep looking, to keep seeing.  What a thing, to be able to paint light.

What a thing, to influence how people so far away in place and in time experience their daily life.

Let's all just keep painting the light. 

"Life Is Beautiful."

Brain cancer is...

 ...just saying what everyone else is thinking.

Right before I snapped today's sunset pic, Darrell said, "Life is beautiful."  Then we received multiple texted pics of people thinking the same thing. Darrell's just saying what everyone else is thinking!

Also Team D beautiful shots:

The Mayfields (left) and the Cases (right) accomplished the first ever Mayfield/Case double selfie triple kiss.  That Lennie!  Photographic genius.  (The good news is that there was reportedly much rehearsal to get this shot right.)

And more Team D beauty:

Beth and Geoff Szabo are the first Team D members to report completion of the Threepeat (all three meals in one day...out).  They also report a quadruple kiss, but we don't have it on record, so we can't verify. 

Cancer Eradication Efforts

• Darrell saw Dr. Park yesterday.  Dr. Park concurs with Dr. Cloughesy:  The tumor site looks stable.  Thus Darrell has taken his last cancer eradication effort of 2017.  Boom Baby.  His next MRI is in January next year.
• We learned interesting Optune statistics.  Whereas approximately 15% of all UCLA GBM patients use Optune, approximately 85% of St. Jude's GBM's patients use Optune.
• In fact, St. Jude is now running a clinical trial for a new Optune use.  In the US, Optune is currently approved for GBM use only.  GBM is a primary tumor, meaning the tumor occurs first in the brain.  The clinical trial is for non small-cell lung cancer that has metastasized to the brain.  Because the cancer originated elsewhere (in the lung) and traveled to the brain, this trial involves using Optune to fight "secondary" brain tumors.  We wish such a trial wasn't necessary, but we hope the findings are positive.
• Thanks for the good thoughts and prayers you sent for yesterday's rough patches.  The biggest rough patch was that things triggered our early GBM experiences.  (We saw the wave from March 2016 again.)  Although it was no fun, hitting a rough patch was a good reminder that (a) we can never completely turn our backs on the wave, and (b) we should never take for granted a day together.

Life is beautiful.

Smiles and Dingle Balls

Brain cancer is...

...looking for the shiny things.

Today had a number of rough spots.

Thank goodness that it also had shiny things like

smiling friends and

dingle balls.

The video version is especially sparkly.

Here's to the smiles and sparkly lights on the other side of the rough spots.

Joy!

Brain cancer is...

 ...getting greedy with holidays.

You have encouraged us to live life with new expectations:  Adequate time to celebrate a birthday?  One month minimum.  Thanksgiving thankfulness is not one day.  Nope.  We need a week.

You may recall that, in our house, Christmas is a favorite holiday, and we love it big. GBM statistics suggested that Christmas 2016 might have been Darrell's final Christmas.  (In fact, Darrell wants you to know that he admitted to me today that he was not that careful in taking down the outside lights last year; he didn't think he'd have to put them up again this year. Darrell!)

You can imagine, then, as Holiday Hogs, how much extra we love this Christmas.  We're starting our celebrations in November, a true first in our family history.

Darrell put up the lights today.  Above are Darrell's and Summer's reactions when Summer plugged in the lights for the first time.  Joy.

Back in Life 1.0, I probably more than once said, "Christmas?  Ugh.  I'm not ready."

Now we realize that it takes very little to "be ready" to experience the joy of a holiday.  Maybe just a glad heart and an eagerness to see tomorrow.

But if you celebrate Christmas and need some help feeling ready, call Darrell.  He'll put up your lights. Just don't ask him to take them down.

Park in the Dark

Brain cancer is...

 ...out of the house together--finally!

I had a very productive grading day today, but it came with a fitness cost. 

By nearly 5 p.m. I had taken fewer than 300 steps.  I didn't know that was even possible!

We enjoyed a dark park walk together to up our mileage some.

Happy Saturday!

Triple Kiss

Brain cancer is...

 ...holding out on you.

We feel a little guilty for sharing this Guillaume life hack so late.
 Sorry but not that sorry.  You have been awesome at the selfie kiss.  But also, since  his diagnosis, Darrell and I have  never kissed just once.  We always kiss three times.  Just in case.  Imagine how many kisses per day that is.
(Yes, you have seen many triple kisses on camera.  It's just hard to identify a triple kiss.  It looks like a single kiss.)
No pressure, but maybe you will join us in the triple kiss tomorrow. And maybe all days forward.

Kiss kiss kiss.

Peaceful

Brain cancer is...

 

...oddly uncontentious.

We had a lovely, peaceful Thanksgiving with LuAnn today. 

LuAnn prepared a delicious spatchcocked turkey, and Darrell roasted a duck.  We had no meat fights. Both chefs collaborated effortlessly, shared the oven, and agreed about when both birds were done.
It was odd.  Delicious, sure, but odd. 

LuAnn also taught us to make gravy. How do moms know all the cool stuff?

 We used the meal as a time to talk about many wonderful Thanksgivings past.

The day was just right. Maybe the best aspect of it was that it was one thankful day in the decades-long rhythm of thankful days.

Thank you for being a part of our rhythm of thankful days. We hope you had (another) wonderful day too.

The Problem with Sleeping In

Brain cancer is...

...awake early.

The problem with sleeping in (until 7:30, not noon, by the way!) is that only Andi does it.  And when I do it, Darrell is up scheming.  Above you see the image that greeted me at breakfast.  (Yes, Darrell brought me coffee and made breakfast, but stay with me here.)

Each sticky note, in order, lays plain the plan for the day.  But, hey, they are sticky notes, so Darrell is flexible and open to reordering the day's activities.  Give, give, give.

We accomplished every sticky today, including the array change.  Check out my beautiful placement.

But, hey, everyone works...

...right?

(PS:  Guillaume Family Life Hack:  Sticky notes for collaborative planning.  You're welcome.)

Mucky Bone Pancake

Brain cancer is...

...looking like scar tissue.

The best and most important news from Dr. Cloughesy this morning is that, in his evaluation, Darrell's tumor site looks like it just contains scar tissue, no sign of any scary cancer-looking stuff.  (Of course visual inspection is necessarily limited, but coming from Dr. Cloughesy, we'll take it!)

Darrell will have another 1-mm slice MRI in 8 weeks.  What a relief!  See you next year, UCLA!

Now, about the pancake.  It's the bright white "u" Dr. Cloughesy is pointing at here:

He says the mucky pancake is in the bone, not in the brain.  We conclude that its location was made clear by the UCLA Tumor Board and perhaps the recent MRI.  Dr. Cloughesy says that, most important, the pancake is unrelated to Darrell's GBM.  Currently the plan is "watchful waiting," with continued regular MRIs.

If we ever need to do something, a PET scan would be a next step.  The PET scan would tell us if the pancake is "hypermetabolizing," which would indicate some new bone tissue growth.

Here Dr. Cloughesy is pointing to the place in Darrell's head where the pancake is located. 

Pointing from the front, Dr. Cloughesy's finger was on Darrell's cheekbone, below his eye.  This location, according to the doctor, would make for an invasive biopsy.  

The news of pancake's bony location has launched a string of Internet research here. We see Dr. Noblett tomorrow, so more reporting later. Just to tempt you: Did you know have a skull base? It's the bottom of your brain box.

Last thing: We told Dr. Cloughesy that it is Thanksgiving week and thus we wished to express explicitly our deep appreciation for his expertise and care. I couldn't do it without tears, which made me realize just how very grateful we are. 

Happy Scar Tissue Day!



Tucked in at Tiverton

Brain cancer is...

...tucked in at Tiverton.

Tiverton House at UCLA had a room ready early so we could check in and head to Napa Valley Grille for our kale salad and other delicious things.  Above you see Tara, our server for the day and new Team D member.  We are also Team T members as of today.


Together we all were thankful for the power of UCLA's medical facilities to make good things happen.


Happy Thanksgiving Day 2 Everyone!

Thanksgiving Week

Brain cancer is...

 ...adopting great holiday ideas.  

That's our Amana Gallery (aka "fridge") above.  Our tradition is to celebrate the little things by sticking happy news onto the gallery.   

What's new for the holiday is that many people seem to be celebrating Thanksgiving not just for a day but for a week (and counting).  New to our Amana Gallery are sweet emails from people expressing thankfulness for good things in their lives.  And when we went to Islands last, night, we received a touching thank you card from our favorite servers.

Okay!  What a great idea!  Why confine Thanksgiving gratitude to one day?  We like it! 

It's official:  The Guillaumes now have a week for Thanksgiving!

Living Dangerously

Brain cancer is...

...living dangerously.

Why do this:

?

When you can do this:

??

Lunch with LuAnn was equally enjoyable, albeit safer.

Happy Friday, Team D!

(PS:  Darrell's disclaimer:  Darrell wants you to know that he was on his tiptoes in pic 1.  Also dangerous.  And misleading.)

No Appreciable Change AND Appreciating Change (Update)

 11/16/17 5:20 p.m. update

Brain cancer is...

 ...celebrating great things.

 Above we celebrated the good news about mucky pancake (see the day's original posting, below) with a meal out.

We also celebrated...

...the newly hatched Dr. Kim Case.

Kim and Mike Case and their three wonderful children have been Team D members from the beginning.  They pray for us, do push ups with us, sneak decorate for us, and have plenty of selfie kiss pics posted in this blog.

What we haven't shared is that Kim was a credential student during Andi's first year at CSUF (1991).  Kim needed to miss the first couple days of class that year because she was on her honeymoon.  I taught Kim several classes and supervised her during her student teaching in Corona.  Later I had the privilege of working with her as she earned her master's degree with CSUF, and I directed her culminating project (Portfolios:  The Big Leagues of Assessment; yes, Kim, it's on my bookshelf). I held at least one of her babies in my office.  Years later, Kim joined the department's full time faculty and has been doing amazing things in education--like many partnerships with local schools--every day of her professional life.  Today she defended her dissertation for the degree of Doctor of Education. 

So, proud, Kim!  And also so teary.  What a privilege to have watched you improve the world through your unfailing efforts as an educator.  You go.

Original posting, 11/16/17 8 a.m.

Brain cancer is...

 

...holding steady.

The radiologist's report for this week's MRI scan posted this morning at 6:57.  Because, in GBM, any cancer cell growth most often occurs at the site of the original tumor, it's very good news that there is no change at the site of the "left frontal mass resection."  Yay!

The mucky pancake (aka "1.2 cm T2 hyperintense focus") is, of course, the spot of most interest given both its uncertain composition and how much recent attention it has drawn from Darrell's physicians.  Good news.  The report notes mucky pancake, too, "is not appreciably changed" since the September scan.  Phew!

That's all the radiologist can say:  that the spot hasn't changed in size or in the degree of enhancement over the last two months.  Now we carry the scans to UCLA for Dr. Cloughesy to examine.  The thinner slice size (akin to higher resolution in photography) may give him more information about the possible nature of the spot.  In any case, probably the 1-mm slice size will be Darrell's new normal setting for future MRIs to allow for continued comparisons over time.

Thank you all for your concerns, says Darrell.

Looking for Distractions

Brain cancer is...

 ...as of yet, un examined.

Above is a screenshot of Darrell's health portal...without MRI results from the radiologist.
His patience and good humor are running a bit thin.

Look Darrell! Sparkly things!

Here are Andi, Teresa, Kim, and Ginger, conquering the education world with coffee!

Look Darrell!  Holiday lights!  So sparkly!

Maybe you need to go put up our lights!

Look Darrell!  Summer and Zach are having a backyard fire!

Let's not look at your computer screen!  The world is so sparkly!

(Help me Team D!  I am not sure how long I can keep this up!)

No, No Results.

Brain cancer is...

 ...making the most of scan day.

We are posting at 8:30 p.m., and there is no news yet of the radiologist's report.  Perhaps tomorrow.

Nonetheless, Darrell did a great job of making the most of scan day.  Above you see him modelling the latest in MRI wear.  (New hospital rule:  scrub pants are required. They have no pockets for hidden metal, and neither do they have zippers, which can confuse the machine's signal.)  Who cares about the reason?  Darrell makes this look work!

We celebrated at...Which Wich (not Panera) for the sake of a little variety.

Darrell gave the double meat gyros a thumbs up...before he ate the whole thing.  Afterwards he said, "Oof!  I just ate a lamb cow!"  We recommitted to our "always split a sandwich" rule.

The great attitude that Darrell conveyed yesterday, in lieu of outward scanxiety, continued today.  I was thoroughly cheered by his laughter and jokes ("More lasagna?  Don't get any on 'ya!") and his conviction that the radiologist's report is not critical in the interpretation of the thin-slice MRI or the overall treatment plan.

You go, Big D!

Optune War!

Brain cancer is...

..battled by an Optune Warrior.

Yes, Darrell achieved another 98% Optune compliance rating today.  Optune Amy says that Darrell should get a plaque for his stellar compliance.  I think a medal is more in order for this warrior!

And look.  We filled up another set of array maps--our battle plan. The maps tell us where to place the arrays and help me keep track of which placement I use for each change. 

 


The last time we filled a set of maps was January 12, 2017 (click this link for that day's post).  What a privilege to need to print out another set!

The "small slice" MRI is tomorrow morning.  Darrell's doing a great job of managing the scanxiety and remaining positive.

Thanks for waging this war with us!

See You Later, San Francisco!

Brain cancer is...

...back home.

We snapped the above pic on our way out of town this morning.  Look waaay up that street for some San Francisco elevation changes.

Darrell drove the whole way, like a champ.

It was a really good trip all around, particularly the part where Keiva and Kristine gave us this tasty treat:  Harvey the Sourdough Sea Turtle.  His face was delicious!

Happy Delicious Sunday, Team D.

Still Here.

Brain cancer is...

...still here.

Kristine and I did our back-to-back sessions starting at 8:00 this morning.  The sessions went well.  We love hanging with art teachers; they continue to wonder about the world, take risks, and see beauty in the different ways one can be human. 


Rather than ending our post here, I need to tell you two stories.  The first is mine; the second is Darrell's.

Story One:  Andi's Story

As you know from yesterday's post, Darrell planned to sleep in while Kristine and I presented.  If you know Darrell, you were with me in doubting the likelihood of that plan coming to fruition.  At 6 :00 this morning, I had trouble making the Keurig machine work.  (Why did I think I could instantly make coffee in a foreign city when I don't make my own coffee at home?)  And I couldn't find my fitbit.  Sure enough, by 7:30, Darrell was downstairs, fitbit in hand, checking my tech, hanging pictures of beetles. Andi hearts Darrell.

Story Two:  Darrell's Story 

A bit leery about the competence of a woman who can't operate a Keurig machine, Darrell pulled up a chair and sat in the back for our sessions.  It wasn't long before I sent him up one flight of stairs to the food place to refill Kristine's cup and my cup with coffee (again with the coffee!).  He was back in our room, 10 minutes later, security guard in tow.  I stepped into the hall for a conversation.


Upstairs, the guard had questioned Darrell about scrounging coffee.  (Disclosure:  Darrell was not wearing a conference lanyard.  San Francisco is full of people who need coffee and don't have a way to pay for it.  Darrell might have been one.)  Upon questioning Darrell, the guard heard his speech and asked, "Have you been drinking?"  Darrell led him back to our session. 


Back in the hallway outside our session (thank goodness Darrell got the guard there!), I explained Darrell's super hero status.  Darrell doffed his hat to share his arrays.  The guard accepted our explanation and wished Darrell all his best.


Darrell wanted you to hear this story. 


He felt bad.  He's a super hero.  He's a PhD in mechanical engineering.  He's a department chair.  Or, maybe if you're a security guard, he's just another homeless guy, drinking, looking for a cup of coffee.


I am so proud of my husband for sharing this story.  He is a constant reminder for me to check my assumptions.  I never know what another human is facing. 


Brain cancer:  Still here.  Brain cancer:  A reminder that if you CAN afford the extra 30 bucks for this view...

...you should do it.  Worth it.

Hey, Bay!

Brain cancer is...

...the long haul driver.

Here is the 7:10 am photo, in the driveway in Fullerton:

Yes, those the the Quinns in the backseat, Keiva and Kristine.
Here's the 3:27 pm photo at the Hyatt Regency, San Francisco.

Darrell has mad driving skills!

Here is a pic on our trip north, including water in the Central Valley.  Bakersfield?  Weird!

We enjoyed happy memories in the lobby.

Here's the view from our balcony.

A and K present tomorrow, first thing, at the California Arts Education Conference.
Keiva plans on helping with set up.  Darrell plans on sleeping in.

You should definitely do what you want on Saturday morning.