Spider Spears and the Allure of Alex World

Brain cancer is...

 ...being drawn in by the allure of Alex world.

Today Darrell and Alex invented a duster that could hit the ceiling spaces where the spider webs gather.  Alex re-envisioned the duster as a spider spear.  Of course! Then he drew his father into the magical, mystical Alex World of spider spears.

Cancer Eradication Updates 

• This week is chemo week.  Days 1 and 2 went fine for Darrell.  What a champ!  After today, he has just two days left before the typical three-week break. 
• Darrell is taking 3 instead of 4 mg of steroids daily this week, his first week of "taper."  It's going well.  No side effects.
• Yesterday Darrell's Optune system was alarming frequently.  None of the usual troubleshooting efforts did the trick.  We changed his arrays a couple days early, and the alarming stopped.  We discovered, thus, that the arrays can be bad.  Problem solved.
• Finally the radiologist's report analyzing last week's MRI scans was posted. The radiologist concurred--as directly as any Lord of Hedge can possibly concur--that there are no changes from last month.  Yussss! (MRI fist pump.)

Happy Hump Day, Team D!

Pupdates

Brain cancer is...

...enjoying blossoming pup relationships.

You may recall that, upon introductions, Beowulf was less than enamored of Mousse's puppish charms:

Fortunately, given time, their relationship is progressing.  Now Beowulf is happy to see Mousse every morning, and we increasingly find them enjoying each other's company:

Synchronized couch snoozing

Mousse also had a great time meeting Bradley.  Bradley belongs to Team D members, the Rodas Family.

Tyler and Zach have been good friends since kindergarten.  You can see Tyler's smile, which is almost as broad as the dogs' smiles:

Zach and Tyler appreciated the symmetry of dog relationships.  Years ago, our lab Lilah taught Bradley how to play as a pup.  Now Bradley taught Zach's Mousse to have some fun.

Here's to all forms of happiness, and to longstanding friendships.

Bonus Content

Four Guillaume experienced one of those unexpected and sweet occasions to be together:  Lunch today.  What better opportunity to take really bad selfies?

It's all for you, Team D.

Phew!

Brain cancer is...

Victory breakfast at Tiverton House

...stable, UCLA confirmed.  Phew.

Dr. Cloughesy confirmed that the tumor is not growing.  The edema is about the same.


Darrell went in with the plan of hoping to up the steroid dosage a bit.  Alex said that our negotiation skills were sadly lacking because, instead of increasing the dosage slightly, we left with directions on how to taper off of them, with the eventual goal of Darrell taking no steroids at all.


That's just tongue-in-cheek.  It's healthier not to be on steroids, and it's encouraging that that should be our current course of action.  Bye, bye, Doughnut Darrell.  Good thing we went to Stan's yesterday.  It will help with quality sleep as well.


Here are a couple more pics of the morning:


Dr. Cloughesy demonstrating similarity in tumor size, July and August.

Dr. Cloughesy and Alex, talking residency program shop




Once again we experience profound gratitude for the many members of Team D., and for their varied strengths.  That's you.  Thank you for your continued support on this journey.

Tucked in at Tiverton

Brain Cancer is...

...tucked in at Tiverton House, UCLA.

But first we had some local adventures:

Alex joins us at Napa Valley Grille.

Local Phenom, Stan's Doughnuts (This one's for you Terri!)

Alex experiences America's largest Ralph's.

Darrell's appointment with Dr. Cloughesy is first thing in the morning.  Fingers crossed that it's a routine confirmation of "stable scan" conclusion from Dr. Park.


All the best to you!

The Anti-Plan Day

Brain cancer is...

...list less, which is not the same as listless.

In our continued efforts to figure out how to be together while not working and in the absence of immediate medical crises, last night upon retiring, we decided that today would be the anti-plan day.

Not easy.
"Shall we go for a walk this morning?" (Sounding plan-like.  Urrgh.)
"Sure, but let's have breakfast on the patio first."  (Good save!)
"Not that we're planning, but if anyone ever goes to the store again, I need beets."  (Doh!)
"How about you start packing for the UCLA trip?" (Smacking, again, of a plan.)
"No!  You're not the boss of me!" (Anti plan!  And sassy/spicy!)

We figured it out by about 2:00 p.m.  Then we loved it. We'll add more anti-plan days to our future to-do lists. 

What picture to post on the anti-plan day?  A random pic!

Sharp dressers Alex and Zach working out with weights in the garage

Please feel free to share your anti-plan success tips with us.

Stable Scan? Check.

Brain caner is...

August 24 MRI.  Two views.

June scan (left) and July scan (right; see tumor cavity near finger)

  ...holding stable.

Although the radiologist's report is not yet published for our review, Dr. Park read the preliminary report during Darrell's appointment this morning.  Dr. Park and the preliminary report both conclude that the tumor is holding stable.  Phew.

We are awaiting the final report, and (as always) we will await Dr. Cloughesy's reading of it during our next UCLA appointment.

Treatment Updates (Technical Stuff)

• Darrell's blood pressure was incredible this morning:  116/58. (Darrell says his one-week retirement agrees with him.)
• His blood counts continue to be great.
• Dr. Park concludes that speech difficulties are likely due to the edema. If Darrell is indeed experiencing pseudo progression, that edema will eventually fade.  So only time will tell whether the difficulties are due to edema (temporary) or necrosis (tissue death; more permanent).  
• Darrell would like to see continued improvement in his speech. Given the likelihood that edema is the culprit, Dr. Park suggests that we talk with Dr. Cloughesy about increasing the steroid dosage slightly.  (The steroid--dexamethasone--keeps the edema in check.)
• We hadn't increased the dosage in the past because Darrell's current dosage (4 mg daily) is the maximal dose a patient can be on to qualify for a clinical trial.  Because Darrell appears to have no tumor growth (hurrah!), he in currently ineligible for a trial anyway. (Not a bad problem to have!)
• We will speak with Dr. Cloughesy to determine whether raising the dose even for a short time would render Darrell ineligible for future trials.
• Fun fact:  The most likely sort of trial in which Darrell might participate--if he faced tumor growth--is one of the immunotherapy trials.  We call that a "fun fact" because many of you Team D members have expressed, since the beginning, interest and enthusiasm for this emerging approach. 

Thanks for sharing in Big D's tentative good news.  More good news:  It's your weekend, Team D!

(P.S.  Today Darrell called me a "poopy chomp."  I think. He denies it.)

MRI? Check!

Brain cancer is...

Darrell celebrates with a sticky bun while we wait for the CD.

 ...celebrating another scan down.

Thanks for your prayers and good wishes!  Success!

No results yet.

Andi's MRI Story

In the hospital, we were greeted by a new tech who smiled and led us back, asking over her shoulder of me, "Are you going to be in the room?"

Darrell's neck snapped to stare back at me.  There was horror in his eyes, and his facial expression said it all:  "Halt!  Your place is in the waiting room!"

I, being, the faster talker of the two, answered, "Yes!  I am going to be in the room!"  I had whipped off the angel charms and removed my wedding rings before Darrell could compose a sentence.

And thus I found myself sitting in Danger! MRI Zone 4 throughout Darrell's MRI. 

Don't worry; I was cleared.  However, because this was my first time in Zone 4, I had no idea how loud the process is.  For those Team D members who have not yet had an MRI or been allowed into Zone 4, use the ear plugs they give you.  It's so loud that the whole room seems to vibrate, and it seems impossible to locate the source of the noise. 

This YouTube video gives you a sense of it.  Turn your speakers up all the way for the true experience.

I also didn't realize that, although the tube looks open and spacious, Darrell's head is bolted down, as was the case during radiation.  No wonder no one loves an MRI.

Scanxiety Revisited

This was one of the many times that sharing something with you in the blog allowed us to process an experience.  We made some real scanxiety progress on two counts:

1. Yesterday's quote about the source of scanxiety being the remembering has held true for us.  Being back at the site of the trauma, where we ended Life 1.0 and launched Life 2.0, has been difficult with past scans.  Now that we've named the experience, we are better able to attack it head on and take evasive action.
2. The second source of scanxiety is the jitters that come with waiting for the results.  We read one tip online that was very helpful to us.  It stated that, whatever the scan results, they are useful.  Either they bring a sigh of relief, or they launch the next stage of planning in the GBM battle.  This tip helped us to understand that the scan doesn't change whatever is occurring in Darrell's head, it just gives us a window into his lovely cranium.

Thanks for being there!  Your weekend is just around the corner!

Bonus Content:  Doughnut-Free Day 10

Darrell's last doughnut was the morning after the Guillaume family birthday party.  We've kept this big news from you.  Because the cafeteria was out of glazed this morning, Darrell maintains his doughnut-free status.

Scanxiety

Brain cancer is...

Comfort Food:  Darrell's Specialty Meatloaf

 ...coping with scanxiety.

"Scanxiety" is the term coined to represent a special form of anxiety faced when people with cancer and their loved ones anticipate the next scan and its results.  For real.  

Darrell's next MRI is tomorrow at 8:00 a.m. at our local St. Jude hospital.  

We hope results will make their way to his patient portal (online) by tomorrow night.

Thanks for your calming thoughts, as always.

Family

Brain cancer is...

...always enjoying family.

We enjoyed a celebration of Darrell's very recent retirement with LuAnn tonight.  Thanks for the card, Roene!  So funny! Behind us is the recently hung patio shade.

Happy Day, Everyone!

Less Manic

Brain cancer is...

...less manic today.

You've probably inferred that the transition to both of us not working has, in itself, taken some work.  By the time we turned out the light last night, fitbit said...

...10.65 miles.  Today we focused on being a bit more mellow.  It worked.

The day started with a girls' birthday coffee celebration at Monkey Business with Hallie (left) and Ruth (right).

I would tell you that the three of us are on a quest to find and visit all the cool local coffee places, but that doesn't sound very mellow.  So I won't. Thanks, Hallie and Ruth!

Kristine stopped by for an impromptu lunch visit.  Great to catch up!  Kristine agreed to take the art class with me.   It's painting in abstraction.  Today's lesson was charcoal sketching. Here's what I did:

They are 3-inch and 4-inch squares.  One goal was to avoid anything representational.  Check.  The second goal was to "activate the space."  Hunh!

Meanwhile, Darrell succeeded in the next home project:

He hung picture ledges in the living room for when I finish the abstract panel series.

We took a walk in...

...Narnia??

We ended the day with one of those great, surprise gatherings:  A backyard fire and burger barbecue, with everyone home.

Less manic.  More kids.  More happy.

Both Hemispheres Disappeared

Brain cancer is...

...making conversations infinitely more interesting.

You probably know that "hearing" has never been Darrell's or my super sense, and we continue to lose our hearing a decibel at a time. 

Hearing loss + Darrell's speech difficulties = interesting conversations
Here are two examples from our walk today:

Darrell heard:  "Both hemispheres disappeared."
Andi intended:  "Our homeless friends disappeared."

---
Andi heard:  "She's taking her phone number for a walk in the park."
Darrell intended:  "She's dressed quite formally for a walk in the park."

---

Okay.  One more:

Andi heard:  "I'll try to be more spicy."
Darrell intended:  "I'll try to be less bossy."

Too bad.  I prefer "more spicy" to "less bossy."

Just imagine the conversation we had about the bird, pictured above.

So Busy

Brain cancer is...

...so busy!

We non-working folks are busy, busy, busy--even on a day the working folk know as "Saturday."

Here are some of our completions for the day.

1. We both got sweet new, sleek backpacks.  Darrell's Optune 2.0 bag has a leaner profile, as you see above.  I got a tiny new one to match his because the batteries are so much smaller.
2. We completed our advance directives.
3. Zach, Summer, and Darrell hung the roll-up shade in the backyard.  (You saw the ladder yesterday.)
4. Andi washed four cars, including Armor All and Windex (a personal best!).
5. Andi enrolled in an online painting class.
6. Darrell got new walking tennies (thanks Henigi!).
7. We walked Beowulf at the park and ended the day by enjoying tacos on the patio.

Hope you had a great day.

Thankful

Brain Cancer is...

...revisiting emo territories.

Long-time readers might remember the 2/17/16 post wherein we explored new emotional territories uncovered in the days immediately following Darrell's GBM diagnosis.  Just because another thing I haven't deciphered yet is how to link to previous posts, here's an excerpt from the emo territory post:

One experience that we each seem to share is getting lost in uncharted emotional territory.  I say "uncharted" because we seem to be finding a whole range of emotions formerly unlabeled on the emo-map.  For instance, an emo-land formerly experienced simply as "bad" has revealed a myriad of finely nuanced crags and valleys.  One example would be "fragile/tired bad."

Just about six months past the day that took us to the emergency room, we have cause to revisit our emotional mappings.  Darrell's GBM journey continues to bring "mixed emotions" (Darrell's recent words) and changes.  One recent change that we realize we've made to our emo maps is that we've blurred the emo territory formerly known as excitement. We far less frequently experience that future-directed emotion of excitement.   

We surmise that this change stems from so much time spent mapping out the present; there's just not very much time left for the future.

Today the present-centered emo territory where we find ourselves firmly rooted is thankfulness.  Here are four moments of thankfulness, from among the tears and other moments of gratitude of the day.

We are thankful to Kim Case for pausing during her early morning walk today to appreciate the splendor of the universe and to pray for Darrell.

We are thankful for all the sources of love that pour into our lives daily (even across species!).

 

 

 

 
 

We are thankful for Chef Cory and--as he leaves for new pursuits--for his awesome sushi and the many, many happy times at Tokyo Kitchen.

We are thankful for tomorrow (Saturday, August 20, 2016) and the opportunity to continue with projects we've already started.

We are thankful for you and everything you do to help us uncover the good places in our GBM map.  We hope we are equally present for you as you face the new territories in your own journeys.

Ferris Bueller's Day Off

Brain cancer is...

 ...today, a lot like Ferris Bueller's Day Off.

Apparently making the most of Darrell Guillaume's [First] Day Off has much in common with that classic '80s flick:  One great adventure after another!

On our way to to-do list completion--which we accomplished for the first time ever!--we had lots of adventures.  Here are some highlights, both off and on the to-do list.

During our early morning walk, the water fowl at the park modeled perfect retirement form:

 Darrell received his highest Optune compliance rating ever:  A whopping 94.7%!

 We found great impulse buys at Home Depot:

Growing oyster mushrooms at home!  What else would retirement be for? (No, Darrell won't be eating the crops, but still.)

We discovered that In-N-Out has peppers near the ketchup:

What the..?? Very spicy.  Be careful.

Alex installed a soft-tip dartboard in the family room.  First attempts:

YouTube Link for Dart Baseline

Good thing Guillaumes are firmly committed to a growth mindset.

All six of us shared stories of the day over dinner:

Who knows what else Darrell's [First] Day Off might bring?

Here's hoping your day was good too.  Hugs.

Last Work Day for Big D

Brain cancer is...

...retired!

Today was Darrell's last day as a CSU faculty member.  Retirement starts tomorrow.  As you see, above, Beowulf is happy about the news.  Darrell says his emotions about retirement are currently mixed, but that he has accepted it.

Alex joined Team Optune today, under the supervisory gaze of his brother.

 Thanks for continuing to care.  Happy Hump Day!

Four in four

 Updated 8/17 with pics.

Brain cancer is...

...goal driven.

We did it! We went to four restaurants in four hours! We decided that having goals is important in the absence of work.

AND we walked our five miles!

 I swear these things are real. Unfortunately what I learned yesterday about linking photos from phone to blog did not transfer to today. There is a limit to how many goals we can pursue per day.

Happy Tuesday!

Taking One for the Team

Brain cancer is...

...taking one for the team.

Today Titan faculty went back to work. We celebrated your efforts, Titans, with mimosas at breakfast and then a walk to the pier.

Walk walk walk. I also spent several hours with this accomplishment: connecting photos to blog on Iproducts. Painful? Yes, but we took one for the team.

Give, give, give! Titans reach higher!

Cheers!

Brain cancer is...

...celebrating next phases.

We had a fabulous lunch with Melanie and Gail, et al. So many "Cheers!" for so many completions and so many new phases.

Cheers to ingenuity! Melanie: Brilliant combination of salty and sweet!

We left Melanie and Gail for...San Clemente.

Darrell said, "Here's to the first day of our  new life together without work."

Cheers!

Birthday Power

Brain cancer is...

...Guillaume Birthday Power!

Today Darrell had the awesome power of Family Guillaume...all in one place!  Everyone was here in spirit, and all bodies save one (thanks for your good thoughts, Ryan, Warped Tour Man!) had the day in the OC for a birthday celebration.  (Names are at the bottom of this post.)

It was the Guillaume family birthday party.  This was our first "all family birthday party."  If you haven't tried it yet, we highly recommend it.  One party, everyone's birthday.  Super fun.  You greet someone and say, "Happy Birthday!" And the response?  "Happy birthday to you too!"  No errors!  Everyone is happy!

We have a million awesome pictures, but the pic above captures the spirit, looking right.

Happy Birthday! Happy Saturday!  Happy Family!  Much Love!

Front row, left to right:  Tiana Guillaume, Charlene Mendez, Greg Johnson, Nancy Johnson, Gordon Guillaume, Stephanie Johnson, Brady Guillaume, Darrell Guillaume, Zachary Guillaume, Gary Guillaume

Back row, left to right:  Alex Guillaume, Stuart Johnson, Amanda Young, Christian Guillaume, Linda Guillaume, Bennett Guillaume, Andrea Guillaume, Summer Yoast.

Birthday Fun

Brain cancer is...

...thwarted by birthday fun.  

Breakfast burritos

 

Ice cream truffle at lunch in the presence of...

...Hungry Bears.

After dinner:  Looking right.

Darrell had a great birthday.  We're ending it with a movie together (Batman V. Superman).  Thanks for all your good wishes!