Gooey Sticky Snowman Head

Reader's Advisory:  Gooey images ahead.

Brain cancer is...

See the sticky goo?

 ...scared by the gooey sticky snowman head.

Some Team D members wanted to know more about the gooey sticky snowman head we mentioned on Monday.  (Hey!  Now that I think about it, I think it's the same Team D members who liked Darrell's stitches way back when.)  

Today we had a repeat of the gooey sticky snowman head, so we were able to catch it on camera. Hurrah for the So Cal Snowman that has brain cancer on the run!

In case you wanted more technical details (yes, you, Roene), here are a couple shots of the goo process at different stages.

1.  Here's what an array looks like before we put it on Darrell's scalp. It's skin-side-up.  If you look closely, you might see that the circles and surrounding "bars" are coated with a fairly solid gel.  (Those circles are the contacts through which the tumor treating fields are delivered to his scalp, by the way.)

2.  Over time, regardless of conditions, that gel eventually breaks down and liquefies. That compromises the contact, and we change the arrays--if we had not yet.  Our heat and Darrell's high activity levels have hastened that breakdown as of late.  See the melted gel oozing out?

 

We changed Darrell's arrays shortly after this goo escape. The bright side about frequent changes (every two days) is that Darrell's head doesn't get any sores on it.  (Typically he gets some minor "hot spots" under some of the circles, particularly on the irradiated skin right over the tumor.) 

The negative side of changing arrays is that it briefly stops treatment, jeopardizing Darrell's 93+% compliance stats.  

But it's not that much of a hassle.  We know that people in hot, sweaty places like Florida need to change their arrays daily. 

We love you, gooey sticky snowman head!  We love you, Weekend!  Enjoy yours, Team D.

Warm but Good

Brain cancer is...

...warm but with four good things today.

Although Gordon C. is correct, 86 degrees is not feeling like a cooling trend, the day was good in at least four ways.

1.  We discovered a new, low-tech heat sensor:

It works like this:  Look at your formerly straight candles.  If they are now curved, you can infer the presence of heat.  Fortunately we found the candles bent this morning.  The worst heat is behind us.

2.  Mousse gave a great assist on the Beowulf bath.  First Mousse helped me trap Beowulf on the couch, and then he was ready to provide any life-saving maneuvers required by said bath:
 

3.  Really great news?  We read an article about a Finnish study that found that regular dry saunas lower men's risk of death.  Quick!  Save yourselves!  Turn off your air conditioners, male friends! (Women, you stay cool.)

4.  Darrell and I have become accustomed to spending most of our time together.  Today Ginger and I enjoyed our annual summer-camp-celebratory lunch at Summit House:

(By the way, yes, that is a birthday treat.  Just because.  How sweet of our server!)

When I got home, Darrell said I had been gone a "horribly long time!"  I checked his math.  He was right. Ginger and I met at 11:30, before the lunch crowd.  When we left at 2:30, the dining room looked like this:

Apparently Darrell was wrong the other day; telling time is his strong suit. It was a horribly long time!

We hope your day beat our day's good things count, Team D. Hugs!

Shady Adventures...OR...Looking for Cool

Brain cancer is...

...desperately seeking cool.

Sunday our air conditioner broke.

Monday it was...

...108 degrees at 2 pm. Of course!  Murphy's law of air conditioning?

Necessity is, as they say, the parent of invention!  Here are some of our inventive approaches for shady adventures.

First, mall walks: 

Very cool, but a bit overwhelming.  Does anyone really buy a mattress at the mall?  A Tesla? 

Today was a bit cooler, so we made it to Craig Park for our walk.

We needed to protect Darrell's Optune from heat, so he led evasive maneuvers:

For instance, we frequently went straight up.  "Where we're going, we don't need roads!"

Even the ducks were thinking creatively to stay in the shade:

Once again we looked again to Beowulf for inspiration:

Car air conditioning?  Seven pounds of brilliance!

Fortunately, the cooling trend continues, and the air conditioner will be replaced Monday. 

Also...we are receiving kind offers of cool air from family, neighbors, and other Team D. members.  Thanks so much!  

Cancer Eradication Updates

• The speech therapist called Darrell today to set up a schedule.  Brave, brave Darrell. He's going back.
• This is chemo week.  This round has been a bit tougher on Darrell's digestive tract, but his spirits are still good.  Tonight, when I suggested he have a bowl of broccoli with his tacos, he accused me of badgering the witness.  Only two more days of chemo this month after tonight.
• Today Big D's arrays literally melted off his head.  They have a sticky gel that makes contact with his scalp and protects him from the ceramic contacts.  He looked like a gooey, sticky snowman head.  No one could wear it better!

We are thinking of you and yours, Team D.  Happy Hump Day!

Timeless Tuesday

Brain cancer is...

...no longer worried about time on Tuesdays.

As we prepared to leave for Glendora for a laid back day with parents, Darrell took a couple tries to accurately calculate the requisite preparation time.   He concluded, "Telling time is not my strong suit." 

We decided that no retired person should need the strong suit of telling time.  It's not necessary for Tuesday's most important activities:

Breakfast with Gordon

Lunch with LuAnn

With this kidding aside, the most important Tuesday news is that sister Nancy's surgery was today. It was an outpatient surgery, and we've heard from her that it went well and that she is resting at home.

Much to celebrate on a Timeless Tuesday!

Stable, UCLA Confirmed

Brain cancer is...

...not growing, Dr. Cloughesy confirmed.

Phew!  Another poopy chomp day! 


The two images to the left are August's scans; the two to the right are this month's scans.  Dr. Cloughesy says that the tumor is definitely not growing.  The "slice size"  for the images was slightly larger this month than last (5 mm versus 4 mm), so unfortunately, Dr. Cloughesy couldn't see finer detail about what's happening in the cavity.  This means I lose my one dollar bet about further collapse.  I'll pay you when I see you.


Dr. Cloughesy agrees with Dr. Park that Darrell doesn't need another scan for 8 weeks.  We'll miss you, UCLA!

Stay cool, So Cal friends!

Tucked in (again) at Tiverton

Brain cancer is...

...tucked in at Tiverton (yet again).

Life makes interesting circles, doesn't it?  Tiana and Alex are living in LA while Tiana is doing an externship at UCLA and Alex is doing one at USC.  Their externships put them in Napa Valley Grille range today.  We had the first celebratory meal for Tiana's birthday.  Okay, the second, with Taco Bell being the first.  More to come.


We are tucked in at Tiverton and ready for confirmatory good news from Dr. Cloughesy at tomorrow morning's appointment.  Dr. Cloughesy usually gives a thorough read of the scan to share his inferences regarding what is happening in the tumor cavity.  Putting money on this:  The cavity is continuing to collapse and form scar tissue.  One dollar bet.  Hard cold cash. 


Happy Sunday, Team D!

A Poopy Chomp Day

Brain cancer is...

...concluding a poopy chomp* day.

*Recall that "poopy chomp" means "perfect job" in Darrell speak. 

We celebrated the clear scan news with a poopy chomp day. 

We started with mimosas and a breakfast burrito (above).

Then we had a nap.  Darrell kept napping while Andi received another poopy chomp massage, thanks to Terri.  Ahh!

Next we enjoyed a calzone at Michelangelos.

We finished the evening with a poopy chomp patio party.

We hope you had a poopy chomp day too!

Thrilled!

Brain cancer is...

...holding stable.

Hurrah!  Preliminary results indicate that the tumor has not grown this month.  The radiologist's report and Dr. Park's reading of yesterday's MRI both suggest that the tumor is not progressing.

We see Dr. Cloughesy at UCLA on Monday, so our "final word" really comes then.  However, all signs are positive! 

Even better:  Dr. Park is ready--if Dr. Cloughesy is ready--to skip a month's MRI and wait until November for the next scan (this is an 8-week span instead of our 4-week span between scans).

Thank you so much for all of your good thoughts, and thank your for sharing in the scanxiety that preceded the great news.

Hit the median PFS?  Check!  Bring on the next odds!

Happy Friday, and here's hoping you have good news in your lives today too.

Smooth Scan

Brain cancer is...

...scanned, smoothly.

Thanks for your good thoughts.  Today's scan went very smoothly.

• They took Darrell in early.
• Darrell's usual, friendly and helpful tech (see above) worked with Darrell.  We enjoy Darrell's "long" history with him.
• Darrell invited me to join him in the room, and I was admitted.
• The CD copy came quickly afterward; not much wait.
• It's still too early for the radiologist's report to be posted to the patient portal.

Zach and Darrell will see Dr. Park tomorrow, who will give his reading of the scan. Dr. Park will also check Darrell's blood work in preparation for another round of chemo anticipated to start Monday.

Happy Almost Friday, Team D!

Ready to Beat the (First) Odds

(Readers' advisory:  Serious content ahead.)

 Brain cancer is...

...ready to beat the (first) odds.

From the beginning of Darrell's GBM journey, our goal has been for him to beat every "odds" numbers that come his way.  We face our first:  Exceeding median Progression Free Survival (PFS).

You may recall from an early post that PFS is the point in a population whereby half of the patients have not experienced recurrence, or progression of the tumor, and half have.  PFS varies by cancer.  For glioblastoma multiforme, the median PFS is 7 months.  That is, by 7 months after diagnosis, half of the people with GBM experience recurrence.

This month, Darrell is 7 months post diagnosis.  Tomorrow is his MRI scan.  Thoughts of PFS are, of course, part of the scanxiety of this month.

You know Darrell; he has every intention of beating this number, and then conquering all the numbers that follow.  

In the meantime, we take our lesson from Beowulf today:  Ears up, full speed ahead.

Scan Details

• Scheduled time:  11:30 a.m.
• No perfusion scan (Insurance is balking; doctors are okay with no perfusion.)
• No report on scan is expected tomorrow.
• Appointment with Dr. Park Friday is morning.

Thanks for your continued good thoughts.  You know that ours are coming your way too!

Joined in the Fight

Brain cancer is...

 

Nancy Johnson at the August birthday party

...joined in the fight for the benefit of others.

One bright candle we lit last night was for Darrell's sister, Nancy.  Nancy was just diagnosed with breast cancer.  Nancy allowed us to share her information with you tonight because she wants to encourage us women to continue with our regular mammograms. 

Because Nancy had her annual scan, they caught her cancer while it was still Stage 1.  According to the National Breast Cancer Foundation, Stage 1 breast cancer is easily and effectively treatable, and the 5-year survival rate for treated Stage 1 breast cancer is 100%. 

Nancy, thanks from the bottom of our hearts for allowing us to share your story and your message:  Don't skip those mammograms, gals!

We promise to be brave, strong, true members of Team N, just as you continue to be for Team D.

Darrell's Cancer Eradication Effort Updates

1.  So Cal Edison approved our request! Because of Darrell's medical equipment, they have granted us "additional baseline allocation."  In other words, we get more electricity at the lowest rate, before we graduate to the higher tiers.

2.  Today Darrell took exactly one tiny pill:

Not even for cancer!  Blood pressure!

He has successfully tapered off the steroids; he now takes none.  We miss you, doughnuts.  We miss you bacon. 

3.  Darrell continues to feel great, to get his miles in, and to keep up his positive attitude. He's continuing to sing '70s songs.  Ask him to do "Thank God, I'm a Country Boy" for you.

Lighting a Candle

Brain cancer is...

 

...not the only member in the club.

Tonight we light a candle in support of loved ones everywhere facing new cancer diagnoses.  Why does the club no one want to join continue to welcome so many new members?  We send you light, hope, and strength for the journey.  May you find brightness and love.

We surely have.

Full hearts and Happy Memories

Brain cancer is...

...so grateful for true friends and their efforts.

We'll be back in Los Angeles in several hours, and we've spent the last day reflecting on just how wonderful the trip was. Maybe you recall me observing in an earlier post that it's rare that I feel excited about the future these days. Grateful for the present? Every minute! Excited about tomorrow? Not so much.

Preparing for this trip was a notable exception. Curt and Barb planned everything. They found the MarQueen, got the rental car, booked the Empress, gave Big D and me the nicest rooms, and they arranged things like pre-boarding on boats. During the trip they were incredibly flexible about times and activities. They made it so easy.  Every day Darrell looked at me at least twice and said, "I am having a great time."  Priceless.

Thanks Curt and Barbie for everything.
Really.

(PS: Curt probably wouldn't want us to post this, but (a) it's not half as bad as breakfast dessert, and he let us post that, and (b) he's too far away to do anything about it. Ha!

Here's to good friends...all around!

Alternate video link: The Operation Continues

Roughing It

Brain cancer is...
...roughing it.

The Seattle sky appropriately wept upon our departure yesterday morning, and we spent a day appreciating great views of the Northwest from the parlor car.

By nightime, when we went to post, there was no Internet connection. Sorry for the delay in posting.

This morning we ate breakfast with incredible water views of the San Francisco  Bay Area.

We'll post some pics upon return. It has been a perfect trip. Laugh count is staggeringly high.

We hope you are enjoying your Sunday, Team D!

Leaving Canada

Brain cancer is...

...loving every minute of  the trip.

Suite?  Sweet!  Pretty hard to beat heavy white robes and luxurious sheets, overlooking the harbor.

We head back to Seattle in a few hours.  Here are a few minutes of another day in paradise:


A scrumptious, included breakfast in our gold-level lounge.

 

We won't "out" the person who chose this as breakfast dessert, but it's real. Okay.  It was Curt.  He's training for the Big D. Breakfast of Champions.

Such a lovely city.

A new Team D member gave us hugs here and promised to send good thoughts all the way to the OC for Darrell.

Best view ever for an array change, and it's the first ever Big D array change in a foreign country.

 

Here's what we saw during the change.

We joined the masses of people taking photos of our iconic Empress.

Happy Friday, Team D!

Oh, Canada!

Brain cancer is...

...living large in the lovely country of our neighbors to the north.

Operation North by Northwest continues!
We have no Internet access, and the lounge computer closes in two minutes.  Therefore our adventures are presented in the order chosen randomly by this machine.



An early morning Clipper ride to Victoria, British Columbia

Look of "burst of color" in the dictionary, and there's a picture of Victoria.

 

Private gold level patio?  Lovely.
 



High Tea at the Empress?  Cheers to all of us!  The couple in the back are the newest Team D members.  Good sports, of course.


 

 

Gold level at the Empress?  Hallways as wide as the 91 freeway.  Very tasteful.

 

We finished the day with a great dinner with this view of the harbor.  Where are we, Beth and Geoff?

 

Hump Day in Seattle

Brain cancer is...

...so hard when Darrell spends hump day in Seattle (not!).

Today was yet another 75-degree day in Seattle. We cruised Ellis Bay, enjoyed the aquarium, loved the northern version of our favored Fisherman--dressed in pirate attire,--and went back up the space needle.

We hope your Hump Day was difficult too (not!).

Alternate video link: https://animoto.com/play/UffgarkThc7X81T1EEf4QQ

Satisfied in Seattle

Brain cancer is...

...satisfied in Seattle.

Notice the blue skies. We can only conclude that it never rains in the Northwest.

Thanks for sharing photos, Welshons.

Good calls, Kristin, on Chihuly Glass and Star Trek exhibits.

There are a few errors in formatting and other things in the video. Too sleepy to edit in Seattle.

Here's to you and your Tuesday, Friends!

Alternate link to video:
https://animoto.com/play/rp0Z0XP18rbFz64mLrLXng

Tuckered Out

Brain cancer is...

...tuckered out. 

In the best way possible.

Alternate video link: 
https://animoto.com/play/cXhY1rG7FOcw9qplomtBjw

In Seattle Baby!

Brain cancer is...

https://animoto.com/play/Yc4WuEyn0TEvTGjHG0MwmQ

In Seattle, Baby!

Back on the Train!

Brain cancer is...

...back on  the train!

Nachos before 8:15 a.m.

Brain cancer is...

...starting the day off right.

Brought to you by Guest Blogger, Alex Guillaume

 

Today, my dad greeted me with a huge smile on his face. I wished him a good morning and asked him if he was excited for his big trip tomorrow. 

 "Tomorrow?" he asked. "I'm excited for today! It's going to be a great day." With that, he disappeared into the kitchen. About five minutes later, he returned with an even bigger grin. He plopped down next to me at the table with a fresh plate of homemade nachos and a diet Mountain Dew. We both cracked up, then I snapped a picture of this champion with his breakfast. 

While crunching happily on nachos using one hand, he slid the plate toward me with the other. I hesitated for a moment, glancing at the clock. Nachos before 8:15 AM? I looked back to my pops, a man in pure nacho bliss. Shrugging, I dug in too. Delicious. No wonder my dad knew today was going to be a great day. 

Here's to a man whose contagious positivity creates happiness everywhere he goes.  

PS...What big trip? (Addendum by Andi)

You'll find out more about said trip tomorrow.  Here are two clues:

1.  A recently renewed passport.
 

10 years older, still a suspicious looking character

2.  One of our traveling buddies, Curt, named the adventure "Operation North by Northwest."


Stay tuned, Team D! (Please?)

   

That '70's Posting

Brain cancer is...

Darrell and Andi at the cabin with the Guillaumes and cool cars, circa 1979

...enjoying a great decade gone by.

Today's post is what Facebook users call a TBT: Throw Back Thursday.  Darrell's treatment has evidently reactivated the '70s lobe in his brain.

Lately he's been serenading me with great hits from that culture-rich decade's radio and TV wonders. Here are some examples:

• The Banana Splits song
• The theme song from Soap
• You're So Vain
• Tie a Yellow Ribbon

These songs make us laugh even when the original artists sing them. Darrell's impromptu lyrics twists up our laugh count considerably.

Here's hoping your laugh counts are climbing ever upward, whichever decade you're enjoying.

Simple and Complete Pleasure

Brain cancer is...

 

...appreciating the simple and complete pleasure of being together.*

This evening's walk had long shadows, cool breezes, and an opportunity to hold hands.  What could be better?

*Thanks, Team D Member Ginger, for the conversation today, wherein I had the opportunity to reflect on our daily appreciations.

Email Inbox Deletion Project

It was fun to hear from some Team D members who have joined the Email Inbox Deletion Project, inspired by Darrell.  Here's how much progress I made today:

Andi's inbox:  Down to 139 unread messages.

Curt--Thanks for the progress report.  I just tried to match your deletions.  Woo Woo!

Here are a couple tips for those Team D members who might be contemplating the Email Inbox Deletion Project:

• Sort by "from" rather than by "date."  All those messages from Macy's?  Out!  Pinterest?  Be gone!
• If you follow this blog (and we thank you!), delete all previous notifications.  That's easy once you've sorted by "from." There is no reason to crowd your own inbox when the entire blog remains alive on Google's server, right?  You can always access past posts at the blog's URL:  http://braincanceris.blogspot.com/ 

No doubt you have your own tips to contribute to Darrell's Email Inbox Deletion Project.  We wonder how many emails we could delete as the Mighty Team D.  (Yes, cancer news continues to be graciously slow.)


Happy Hump Day, Friends!

An Empty Inbox

Brain cancer is...

 

...giving Darrell time to brutalize his email inbox.

In the pic above, the words on the screen say--regarding his inbox: "We didn't find anything to show you here."  We aren't sure how things are at your house, but that has never happened in our house. Zero messages?? To give you a sense of the scope of this accomplishment, please see how many items Darrell deleted this month:  31,689.  Be proud, Darrell, be proud.

We are in that sweet spot of the month where cancer news is (thank goodness!) at a lull. And so we can share some cancer research videos. 

The first video I include only for sake of contrast. It is bad.   (Follow the link and click on the video.  It's half way down.)  Try this challenge:  Hold up one finger every time you hear a word you don't know.  Stop the video when you get to five.  It's like they are speaking a different language!

Next we found this video.  It's a TEDMed talk by one of the executives at Novocure.  It's clear, informative, and uplifting.  It explains the cell disruption process caused by Optune, and it puts the research into context.  It reaffirms our hopefulness.

Check it out if you have 15 minutes to spare after deleting some emails.  (Ha!)

Fine, Some More

Brain cancer is...

...fine, some more.

We are having another purple day.  We enjoyed breakfast with Gordon, then lunch, then Zach and Summer got back home, then we took this pic. 

You've heard us mention David and Mitra.  They are Alex and Tiana's good friends.  David and Alex were besties in high school, David and Mitra were in Alex and Tiana's wedding, and now Alex and Tiana will be in their wedding. David and Mitra are great Team D members, checking in regularly.

Also, they don't complain about looking right.

Gotta love 'em.

Gotta love you!  Happy Labor Day!