Brain cancer is...

 

...Eye dropper, brown, honesty, tulip.

Yes, friends, Thursday is speech therapy day.  We're going to give you a memory task.  Listen to these four words.  In ten minutes, we're going to ask you for those four words again:  Eye dropper, brown, honesty, tulip.  [You're going to need to check your own work here.] 

Darrell was given this task by Speech Therapist K in the hospital, so by the time he met Maureen last week, he was really good at it.  We all were. 

The problem is that the tasks get harder.  No four-word memory tasks for Darrell.  Unh uh! Maureen has analyzed Darrell's functioning and has determined that he's working at such a high level that what he needs is deductive logic puzzles.  Turns out we all need deductive logic puzzles.

Here's where your commitment to Team D climbs to another level.  Every day, just for fun, work out a single puzzle.  Good news!  I've found them for you online! 

Logic Puzzles  (or copy paste into your browser:  http://www.logic-puzzles.org/ )

Don't register, just play.  Click the red text:  "Solve a Logic Puzzle."  Start with a 3 X 4 grid, and choose "easy" for the level.  They give you all sorts of support:  Hints, clearing incorrect answers...What's not to love?

What's not to love is that logic puzzles actually cause brain lesions in 68% of the people who play them.  Don't really do it.  We love you enough to tell you to save yourselves.  Darrell would rather have two boost treatments than solve one logic puzzle.

(The image above is today's puzzle.  It's blurred to simulate the actual experience, as we forgot Darrell's reading glasses. This, of course, heightened the fun.)


To ease our brain pain, Darrell chose the CSUF campus for our daily walk.  Here is our walk in a 30-second video:

A 2.0 Walk through CSUF

(Or copy paste into your browser:  https://animoto.com/play/nPbCzY7kYVRq4d5TOmPVLg )

We walked 4 miles of a respected university campus and its buildings.  Guess how many logic puzzles we saw. 

Happy almost-weekend, friends!  We appreciate you and hope you are surrounded by beauty and laughter.

Brain cancer is...

...about to get super blasted!

Above is the paper-towel drawing that Dr. Dolkar did during our initial meeting with her in February, as she described the radiation plan. 


She let us know that the last seven treatments would be what's called "the boost."  During the boost, the radiation is concentrated directly on the tumor itself (or where it was before surgery, anyway).  During the first 23 treatments, radiation covered not just the tumor but the larger region beyond the tumor where there was post-surgical swelling.


Welcome to the boost, Baby!

Brain cancer is...
...Up and down and up and down and...

(Viewer alert:  No new info today. You've seen this all before.)

This morning the humor continued when the creature arising from our bed to start the coffee named himself Mungo.  Mungo moved like a grey-back and spoke like Tarzan.  No video--conscious choice--you in mind.  Morning was an up.

Then we went down.  We did taxes, more anticipatory grieving (cancer talk) with Gordon, and we spilled it to our favorite bartender, Jake, at Islands

(Yeah, they know us at Islands. But Team Darrell doesn't judge.)

We added our first Adventure Journal pic with a gift card to Islands (Thanks Candy Plahy!).  Up.  

Then a package from Alabama Lil' Stomper, Jenn Ponder arrived.

Down...up! Y'all recognize new chips for the Second Annual American Chip Off, southern style.  And every other item has great meaning, shared in her note.  Thanks, Lil Stomper.  There is only DO. There is no try.

We ended on some neutral ground.  Here's the view from our family room couch. We anticipate more photos from this same spot.

  

These points are just some of the dots we connected throughout the day.  There are many others.  Thanks, everyone.

Brain cancer is...

...not affecting Darrell's sense of humor.

The small scoop they took from Darrell's brain apparently did not affect the humor lobe. 

Above is Darrell, softly humming to himself while he dissected a box of Sees candy at the breakfast table.   (Don't you gasp!  See's candy and Mountain Dew were before breakfast.  After the See's he had a healthy, balanced meal.) 

Darrell has everyone laughing lately.  Friday he came out of the radiation room to the waiting room staggering like a drunken man, or as if the treatment brought him within death's grasp.  This morning, I was ready for the stagger but instead was greeted with a stealth sneaking Darrell, quietly escaping unnoticed.

And here's the pièce de résistance.  He's been perfecting his Two Face (the Batman bad guy) moves for a while and we realize that now's the time for this particular feat.  

Or click here for the private YouTube link:  https://youtu.be/FpkilzZBhPk

We thought about re-recording it because I started laughing, but that's pretty much how life with Darrell is.

Here's hoping your day had some humor in it too.

Brain cancer is...

 

 

...refashioning holidays.

Easter is important to us, and Darrell and I typically host, with much planning involved, and many family members needing to consider their schedules.  This year we didn't think of the holiday until about...Friday.  Just like that my mom LuAnn had the meal prepared and ready to bring over, and both Melanie (despite work-induced sleep deprivation) and Gail were able to make it, daffodils in hand. 

 

People were good sports in dying eggs (above), and conversation around the dinner table was sweet. It was a great reminder to lean into priorities.  Thanks, family. 

 

More little "eggs" are Darrell's wonder chemo pills.  Here's what it looks like to prepare for the week:

 

 

• Foreground = temozolomide (140 mg big pill plus 5 mg tiny pill; 7 days a week)
• Background = the usual plus anti-nausea and antibiotic to prevent nasty infections like pneumonia

After this week, Darrell has only one more week of this particular dosage.  Maintenance phase treatment is still being planned.  Traditional treatment would continue temozolomide one week each month.  The tumor's MGMT negative status might change the dosage to metronomic (daily, but lower dose) or might change the agent.



 

Thinking of you in this season of rebirth.

 

 

 

 

 

 

Brain cancer is...

...all family, all the time.

Today, with Gordon hosting, the Guillaume side of the family gathered for a great meal in Glendora.  This is the first time that we've gathered as a group since the Dx.  Truly what a blessing to be with family members, each of whom brings a different set of connections, a different collection of memories, to Team Darrell. 

• Standing, LR:  Brady (youngest sibling) and wife Linda; D, A, and Z; Brady and Linda's sons Christian and Bennett. 
• Seated:  Greg (Nancy's husband) and Nancy (second sibling); Gary (eldest sibling--Happy Birthday Gary!); Gordon.  
• A number of third generation members are far flung but here in spirit. 

Of all the people on earth who love Darrell, in this photo are those who have loved him the longest.

From our hearts to yours; here's hoping you're feeling loved wherever you are this weekend.

Brain cancer is...

...in the background today.

Today we both woke up without a heavy weight as our first thought. And things just got better.  Radiation was done early, we shared the usual breakfast burrito (as you see, above, at our typical patio table), and we arrived home to great love and prayers, Wonder Woman underwear, a family day, and pizza and popcorn in front of a fire and superhero movies.  (Thanks, you many friends!)


Additional great news is that our emotional dust settled some today. We're getting information from our campuses, and we are beginning to make plans to operationalize all of our many life scenario flowcharts.  The saying is, "Hope for the best, and prepare for the worst."  Just so you all are prepared for the worst, in ten years, Darrell and Andi might have run through all their various accounts (except for pensions) with expensive world travels, and they will come knocking at your door, asking if they can hang some curtains for you.  Say yes, okay? 


Have a wonderful weekend, and for those who celebrate the holiday, Happy, Happy Easter.

Brain cancer is...

...documented in 50 blog posts.

Some of you have asked if Darrell and I find writing this blog therapeutic.  Mostly it feels great that you care enough to read it.  What it does for us, therapeutically, is allow us to decide the meanings we wish to extract or create from each day's experience.  Brain cancer, you're not the boss of us!  We'll tell you what this day means! 

We lead with that intro because today's posting is an example of brain cancer not being the boss of our experience.


Yesterday's posting was number 50.  That makes our blog a quinquagenarian of sorts, if blog years are measured in posts.  When Darrell and I saw that we were completing Post #50 last night, we reflected on just how much life has changed between Blog Post 0 and Blog Post 50.  We made a list of 50 things we have learned as a result of Darrell's Dx.  (There's one lesson for you!  Dx is cancer talk for diagnosis.)  It took very little time to make a listing of 50 things we've learned.  But when we finished, we were sad.  So we decided not to post that list. We're the boss of us!

Instead, for Post #51, we revisit Posting #1 in terms of both content and intent.  In Post #1, we shared the rationale for the "Brain cancer is..." format of the blog.  For the new team members in the house:  We chose our format because, in the hospital, Speech Therapist K asked Darrell to complete the sentence for a number of prompts.  Example:

Therapist K:  Name all the animals you can in one minute.
Big D:  Dragon! [Done.]

He and I thought he did fabulously, with responses were hilariously clever.  It is thus fitting that Post #51 revisits speech therapy and Darrell's humor.  Hurrah!

Darrell saw speech therapist Maureen and speech grad student Shelby today:

Maureen and Shelby are both wonderfully empathetic and fully appreciative of the awesomeness that is Darrell.* For instance, when he occasionally cheated, Maureen complimented him:  "Great use of strategies, Darrell!"  And she gave him cookies.  We'll see Maureen and Shelby every Thursday afternoon for speech fine tuning.

On the way out, it was great to come full circle.  We saw Therapist K in the hallway.  She was genuinely happy to see Darrell's progress.  We didn't say anything about the dragon.

Oh, one last thing:  Maureen asked if Darrell's great laugh was the first reason I fell for him.  Two more very intelligent members added to Team Darrell!


*Darrell objects to this characterization, but Andi wins.

Brain cancer is...

Wednesday 3/23/16 10:30 a.m.

  ...looking beyond "treatment" phase to the (very) next step.

Darrell is officially into the back half of his chemo and radiation treatment.  "Maintenance phase" is no longer a "we'll cross that bridge when we get there" abstraction.  Stuff has gotten real.  The hair loss is real.  The side effects for the anti nausea medication are real.  The consideration of the maintenance phase chemo regimen is real.  The adjuvant treatment that we--while still in the hospital long ago--called "tinfoil hat therapy" is so real we can touch it.  In the photo, above, Nurse Julie explained the Optune therapy to Darrell during our post-radiation visit to Dr. Dolkar today.

Four white (don't get me started about white) bandages, each with sticky stuff and six transducers, just like the one above, would be stuck to Darrell's shaved skull.  A ponytail of electrical leads (one from each bandage) would connect to a battery in a backpack that is, as Charlene points out, a stylish grey.  Darrell would plug in the device for at least 18 hours a day.  Patient compliance is tough...particularly for a guy who thinks the color blue would call unnecessary attention to him...so it's a big decision.  Darrell's thinking about it.

We are thankful for friends and family and the distraction y'all provide (of course in addition to the unfailing support).  Today Gail and Melanie hosted a steak and lobster barbecue, with brownies, berries and real cream for dessert.  We had the privilege of having many Munns family members together (including a vast majority of kid cousins, with Maddii and Katrina). We said good-bye to Mer, Matt, Nolan and Eva.  We tried hard not to ask ourselves that Life 2.0 question, "How many more times..." as we drove off.

It was an incredible week.  Thanks, Family and Friends, for all of it.

Brain cancer is...

...leaving us speechless.

Today was the Bower's Museum and then, as my mom called it, couples' night out for the sandwich generation.  Here's us heading for Cat and the Custard Cup.  It was fabulous.  Thanks Matt and Mer.  

 

 

But, before that, we had a visit from the CSUF contingent consisting of Kim Case (faculty friend and Titan alum) and Titan alums and teachers extraordinaire Courtney Crites and Monica True. 

They came bearing gifts from hundreds of Team D members.  The journal you see me holding has page after page of "favorite places."  Each page (or more accurately "spread" as art journalers call completed works) has images related to the journalist(s)' favorite place--or one of ours--along with personal messages and incredibly generous gifts for visiting those places...along with photo spaces for our future pics at each locale.

We are speechless.  The monetary value of this journal is impressive on its own, plus the emotional and artistic value?  The time it took project leaders to put it together?  Priceless.  There is an entry by a brewery manager who donated a gift card when he heard about Darrell's team. There are entries from children in classes of Titan teachers who include the arts.  There are entries from current Titan block members and their faculty.  There are entries from alums...and from their parents (are you kidding me?).  There are spreads from EDEL faculty emeriti and from current faculty members in EDEL and from across CSUF's College of Education. So many team members.  So much love.  

Here.  You watch:

http://youtu.be/EUqjhzrnLto 

The message of leaning into the future and enjoying every adventure life has to offer just has us grasping for words.  How do we say thank you for such a host of voices expressing one message of hope and joy? 

Truly adventure awaits.  I am not sure we could do it without you..

Brain cancer is...

...enjoying family and California...on a Monday.

 Really, why should Saturday and Sunday have all the fun?

Upper Newport Bay hike

Pre-awesome-Granny-dinner fire pit

Granny's famed Tabebuia tree and the Los Angeles skyline (Yes I enhanced the colors.  Because I can.)

Same view, different beauty

Monday's good times end with a laugh, courtesy of Nancy and her family.  Nancy clearly has a deep appreciation of the meaning of "Brain cancer is...all about the hats."  Here's Darrell wearing his gift, a brand new visor with its own hair. 

When Darrell wears this hat, we call him Chad.  You should too.

Brain cancer is...

...humbling.

In addition to the all the humbling realizations of the physicality of GBM (Speaking takes effort! Hair is coming out in clumps!), equally humbling is the position in which it has placed us as the focus of so much love.  We are in our second month since Darrell's diagnosis, and we are in such awe of how you all continue to give of yourselves to support Darrell.  We truly are humbled by how much of your lives you are giving to Darrell and his family. 

I don't know how to talk about it without putting people on the spot for their many expressions of faith, care, and selflessness.  It makes us feel very small.  It turns out there's another kind of wave:  The wave that rushes up to support us in every sort of way.  I don't know how to say anything other than we are completely appreciative of all the things you think to do even when we have no answer to the question, "How can I help?" 

I know I run a huge risk in mentioning just some of the things that astound us without mentioning them all.  But maybe you'll forgive us for giving just a subset of those things and, in your mind, multiply the items on the list to get a sense of the enormity of love and support that surround us.

We're academics, so let's take a representative sample.  A time sample seems appropriate.  Here's what people did in just the last three days (Friday-Sunday):

People...

1. brought us homemade soup for lunch, and more vegetable substitute!  
2. took me out to coffee just to unwind a bit.
3. flew from far away and drove Friday night in Southland traffic to be with us.
4. came after painful medical appointments to be with us.
5. sent us cupcakes...on ice!
6. picked up our packages in our absence and watched over them, thank goodness keeping the bench press and cupcakes safe.
7. in our absence, came en masse to our house and took care of things I couldn't even hold in my brain.  You know those things you think about for 20 seconds and then forget when you walk away?  Our friends took care of those things.  They got the paint OFF the couch and ONTO the wall.  They planted some things and pulled out others.  They dusted the high spots and the low spots. They left us beautiful blooms and tasty treats.
8. sent us a gift card to El Torito for a great ending to a family weekend.

You can see why we are humbled.  As I say, this is just 3 days in the life of Team Darrell. You are allowing us to focus on all that is beautiful in life, including friendship. 

We know that giving requires sacrifice on your part. We know it costs money, time, and huge emotional investment.  We are humbled.  We love you.

Bonus content:  Here's our weekend in 30 seconds. 

Brain cancer is..

...well matched!

The Munns side of Team D?  Almost entirely in attendance today!  L to R:  Gail, Melanie, LuAnn, Zachary, Summer, D, A, Nolan, Eva, Meridyth, and Matt.


All is as beautiful as you would hope.  Thanks for the continued positive thoughts.  More good stuff coming tomorrow.

Brain cancer is...

...Half way radiated!

Updates

• Radiation treatment 15 out of 30?  Check!
• Final appointment with surgeon's office?  Check! 
• Happy, happy thoughts from CSUF friends?  Check!  (Many thanks!)
• Family getaway to South Coast Winery Resort?  Check!
• Meridyth, Matt, Nolan and Eva landed at LA and are on their way for spring break fun?  Check!
• These are the views from our villa.  Pretty spectacular. 

Happy Weekend, Friends!

Brain cancer is...

 

...all about the hats!

Darrell's first hat was from Melanie and Gail, a motoring hat.  It's for the British side of him, driving about, supercilious. Love it!  Great foresight.  Above is the hat from Mer and Matt, the Dublin walking hat.  We post it in honor of St. Patrick's day.  Erin go bragh!

And, in keeping with our promise of three entirely positive posts, here's the first:

Here's  to the potential positive power of the tinfoil hat (not) that we call Optune.  Today Dr. Park confirmed that Optune is a good option for Darrell.  It's a clinically demonstrated treatment for initial GBM patients. Check it (and related research) out at the site above.  Also do your own research with "Optune" as the search term.

Even before surgery, we heard about Optune.  Every family member began planning awesome options to enhance the look of Optune.  Winner to date:  Packers beer glasses.  I think that's Tiana.  Andi's idea:  Let's move away from white bandages.  How about mango?  We are open to your ideas!

More Positive Updates

• Blood pressure at Dr. Park?  115/75.  Awesome!
• Dr. Park's willingness to listen to maintenance phase treatment options for MGMT negative tumors?  Super cool.  Looking at metronomic dosages of TMZ during maintenance.
• Lunch date?  Better than blood pressure readings.
• Moral lesson?  Best ever!  We knew (pre-surgery) when Dr. Park took Darrell as his patient that Dr. Park was overbooked.  Today, 45 minutes into our wait to see Dr. Park, an 80-year-old man told us that he was ABOUT TO WALK OUT.  He had prostate.  (That's cancer talk.)  He was ready to leave.  He needed to go to work.  Darrell and I had a decision to make.  This decision was made more difficult because we were knee-to-knee in a crowded room full of cancer patients.  Should we:
• A:  Punch this guy in face?  He's got two punch strikes against him: (1)  He's 80.  (2)  He is maintaining a Life 1.0 job.  Gotta go!
• B:  Listen with patience?  Life is falling apart.  
• We went with B:  Listen with patience.  Whenever life falls apart, it's horrible. When this guy asked us, "Why I am I still around, at 80, with everything falling apart?", we told him, "Maybe it's enough that you made us smile today."  When he left, he looked us in the eye, laughed, and said, "Have a good day.  See you next time."  We hope we do.

Brain cancer is...

February 9, 2016 2:46 p.m.

...Life 2.0.

[Viewer's advisory:  Serious content ahead.  We hope this is offset by (a) the next few posts, which we anticipate to be happy ones, and (b) the fact that in this image you can see what's under the staples:  Darrell's Terminator skull cap with titanium plates. Cool fillings in the back molars too.]

Yesterday morning as Darrell enjoyed his half of the breakfast burrito with his smiling and patient wife, he remarked, "I don't remember what life was like before my diagnosis."  That got us thinking.  Brain cancer seems to have dumped Life 1.0 from the hard drive and replaced it with Life 2.0. 

Together we composed a list of some ways that our Life 2.0 seems, for now, to differ from Life 1.0. 

• Life 2.0 = Little interest in the upcoming presidential election.  (Life 1.0 = arguing vociferously for our candidates.)
• Life 2.0 = Accelerated decluttering. Life 1.0 = Keep it just in case.
• Life 2.0 = New (ir)rationalities.  Never during Life 1.0 did Darrell want to punch a man using a walker for the heinous crime of living long enough to be old. (Andi has already admitted the desire to punch people in the face, but she's less particular in who's going to get it.)
• Life 1.0 = Empathy for many, many terrible cancers.  Life 2.0 = total preoccupation with just one. 
• Life 2.0 = Learning the other partner's jobs.
• Life 1.0 = The un-examined life.  Life 2.0 = Reflection on every experience.
• Life 2.0 = Augmented reality.  Amplification of colors, beauty, sadness, love, sounds, etc.  Life 1.0 = Didn't see it.  Didn't hear it.
• Life 2.0 = Emotional honesty.  This would have been a good idea for Life 1.0.
• Life 2.0 = Profound appreciation of the connections and love that bind us all to each other.
• Life 2.0 full time job = Cancer and its treatment.
• Life 2.0 = New appreciation that our kids are "cooked."
• Life 1.0 = 5- and 10-year plans.  Life 2.0 = a series of 1-year plans. 
• Life 2.0 = Thinking about one instead of two.  (We know that no one ever knows who will go first; we just never thought of one of us without the other during Life 1.0.)
• Life 2.0 = Asking questions that begin with, "How many more times..." and  "Will we ever..."

Brain cancer is...

...making me look at myself in the mirror.  Yuck.

Today in the waiting room I was doodling away on this card...

... when another patient rolled up near my spot.  I looked up, his face captured my full attention, and our eyes locked.  His face was sunshine.  Have you had that experience, of looking someone into the eyes and seeing the metaphor ("sunshine") not the simile ("like sunshine")?  That was this. 

When I asked how he was, his wife answered. "We are fine."  I went back to my doodling.  "Don't scratch."  She told him.  Then again, "Stop scratching."  Once more.  "You're not supposed to scratch!"

My stomach fell.  Ugh.  That's me.  Crud.  I sound just like that. I know she loves him.  She was by his side, taking care.  Keeping him on track.  But she sounded impatient.  Just like me.  I've got this baby, balanced on my hip.  It's got diaper rash, a sunburn and it's teething.  It hides my keys.  "Who wouldn't be impatient?" I ask you?  Except for this:  My husband's face is sunshine too.  I dialed the patience meter up to full and reset it.  When Darrell came out, I smiled.

This glimpse into the mirror came just in time because after radiation Darrell took me on a surprise date for breakfast at our favorite courtyard location:

I enjoyed Darrell's company and my half of the breakfast burrito guilt free.  When I told Darrell this story, I reflected on how easy it has been to learn the lesson, "Be nice to people you don't know," and that it's surprisingly harder to be consistently nice to the ones I love the most.  Weird.

Brain cancer is...

...part of a really loooonnngg Monday!

Sunday's walk:

 

Today's walk:

Was your Monday like ours?  Do we ever get to vote on this time change thing?

Today we each lived our day jobs:  Kids and school, Darrell and a great first shot at taxes (hurrah!), Andi and a Smart Board institute.

Then family errands.  And also we fit in the cancer to-do items, with one or more family members attacking tasks: 

• Radiation treatment #11 (Today Darrell stifled a sneeze in super hero mask. Blog worthy.)
• Pick up CD with pre/post surgical MRIs for UCLA visit
• Call specialty pharmacy for our usual pleading session
• Call chemo nurse for assistance in alleviating future pleading sessions
• Field call from patient advocate
• Book room for UCLA visit
• Call speech therapist scheduling again (We think they aren't real.)
• Take chemo pills and their friends

Notice the things missing from this list, including pack a lunch and pick up Thai food for dinner.  Not sure how we would have made those things happen too.  Thanks Team D.  Did you eat dinner without having someone bring it to you?  Not sure how you manage!  You impress us! 

Thanks, too, for all the encouragements in their various forms (e.g., fridge magnets, emoticons...so many!).

Brain cancer is...

...making time with our peeps even sweeter.

We spent the weekend with Beth and Geoff in Murrieta.  Our friendship with the Szabos is only three months younger than our 32-year old marriage.  We are fortunate indeed to have friends with such a history...so many adventures. (Don't share them, Geoff. Less said, best said.)

The photo was taken at Wiens winery in Temecula, where we enjoyed a tasting before an awesome Beth-made dinner.  Darrell isn't partaking during treatment (liver protection maneuvers), and Zach and I frequently are joining him in dryness for liver solidarity.  But sometimes you just gotta take one for the team!  So Zach and I enjoyed the wine.  Anything for you, Darrell!

Let's raise a glass:  Here's to more adventures with these peeps...and all of our peeps!

Brain cancer is..

...a really good reason to look at old family pics.

In fact, we'd like to recommend "New Rule for Everyone #2":  Enjoy family pics.  Notice the rule doesn't say, "organize family pics" or "label and date family pics" or "put family pics into albums."  It is limited to simply the enjoyment of family pics.  If you get out the family pics, enjoy them.  We hope you notice that Guillaume rules leave enough room for interpretation that they might be seen as an invitation to do whatever you want. Yes! If you enjoy organizing photos, for sure do that. Otherwise just look. That's what we did.

We had so much fun laughing at years of images the other day, remembering so many events and happy trips that we can safely recommend the practice.  Above you see Turks and Caicos, Dana Point, and Hawaii.  And you can imagine the hundreds of other photos, many with you in them, not posted here. 

Perhaps the best reason to look at old pictures?  To plan the future pictures!  More travels, cookie bakes, graduations, patio evenings, more of everything! 

Brain cancer is...

...so much easier with family and friends!

Yesterday we saw just how mean that Baby can be. Thank you so much for your comments, texts, and emails.  All of your thoughts banished the Baby and today looks brighter.  It was very helpful that (a) you said that you can see the same thing we're seeing and (b) you gave us different perspectives, different ways to respond to what we're seeing.

You are such a vital factor in our being able to address Darrell's cancer with hope and strength. Every day there are about 15 acts of love and care from you, Team Darrell.  Act of Care and Kindness #2 from yesterday is shown above. That's what we saw on our front porch from Christine upon returning home from radiation.  So many acts followed that one...K and K, H...all your messages! Further, we are well aware that, even though you make it look easy, your support requires time and effort far beyond what we see. Example: the efforts of Christine's dad, Fred, below, were absolutely necessary to bring Act #2 to fruition. Thanks, Fred, and thanks all the other team members working in the background, middle ground and foreground.

Donna clearly has it right: the sand beats the wave every time...with the grains hanging together and sparkling in the sun.

From the bottoms of our hearts: thank you!

Happy Friday to you and yours.

Brain cancer is...making me ask:

 

...can you see the wave?

Today, while Darrell was having his blood drawn, I read the 50+ pages of his medical record (paper copy of the fax to UCLA) that begins with his ER admission.  Nothing new, but seeing it in third person ("Patient is a 55-year old male..."  "Patient denies smoking..." "Heart and other systems normal"...)  made me and then us (because I can't keep quiet) relive the experience.

Glioblastoma is its own kind of awful. When we read the stats...prevalence...median survival rate...MGMT status...recurrence rates...all of it, it feels like a huge, crashing wave.

I need you to say that you, too, see the crashing wave.  "Hey, stay positive!"  We're sure trying.  Does the casual acquaintance with that advice see the wave?  Or is he in the sand, facing us, with his back to the impending crash? ("My aunt had squamous cell cancer and she's a 20-year survivor!")  Please, can you say that you've seen the wave and that you still believe?

Thanks for keeping an eye on the horizon.

Brain cancer is...

...a chance for new rules for everyone!

Brady and Linda took the day off, drove down, and took us out to lunch.  Brady in particular noticed that it was really nice to not be at work on a Wednesday and instead to eat lunch al fresco with family.  We agree. Thus, we seem to be facing a great opportunity for us all to reconsider rules by which we live life.  We suggest a new rule:  No Work Wednesdays.  Hurrah!

Updates

• We see Dr. Dolkar (radiologist) on Wednesdays after radiation.  She's a great listener and uses "wait time" like an expert teacher.  Today she filled us in on what post-radiation life will be like.  Namely, Darrell will have an MRI about every six weeks.  We hope to see no changes over time to the edges of the "cavity" where the tumor was removed.
• Apparently many GBM patients choose to be patients of both their primary oncologist and a specialist. We got our appointment for a consult at UCLA with Dr. Tim Cloughsy, noted GBM expert, on April 11.  It's the first weekday after Darrell finishes radiation.  (So soon!  I know!) 
• Checking in on the "be nice to people you don't know" strategy:  Our tentative finding is that it does contribute to the quality of daily interactions. Three recent examples:  The man at the hazardous waste (paint) drop off was a treasure. The guy at Alexander's rugs treated us like family.  The scheduler at UCLA stayed on the phone to tell us that it was her top priority  to call us back.   Wait a minute!  These seem to all be examples of people being nice to us (and not the reverse). Gratitude journal for sure.

Brain cancer is...

Or click this link:  Radiation Treatment

...technical!

Or at least its treatment is; Darrell calls this "the technical post."  Darrell's siblings are great supporters. Sister Nancy asked for more information on the specifics of a radiation treatment, including how many times the arm revolves around Darrell's head during a treatment.  Thanks for asking, Nancy! We figured if Nancy was wondering, others might also like to see how a treatment proceeds.  Here's a video to give an overview of the specifics of a treatment session.




Production Note:  We try to ask permission from anyone whose image is included in this blog (including, in this video, Tony and Hung.)  We also try to be respectful about not including people's names, stories, or contributions unless we run things by them first.  We don't want our choice to go public to force others--who might prefer to remain private--to also go public. That's also why we sometimes include initials instead of names; if we haven't asked, we are trying to play it safe. 


Thanks Are in Order


Thanks for checking on us after yesterday's tough spots.  We did bounce back after a good night's sleep...and with your empathy and care. 

Brain cancer is...

...making for a pretty tough day.

The Baby kept us both busy today.  Then, tonight, Dr. Park called with the MGMT marker results.  Darrell's tumor is MGMT negative, which means that it is probably less receptive to chemotherapy than if it were MGMT positive. 

The most accessible explanation I have found for how the chemotherapy agent (temozolomide) kills cancer cells, and how MGMT makes a difference, is found on Wikipedia. Read, in particular, "mechanism of action."  All my other readings have been scientific and harder to decipher.  If  you find something better, please  share.

The implications for the near future are that

1. Darrell's not a candidate for the local clinical trial (it's for MGMT positive tumors).
2. He's also not a candidate for the UCLA trial.  The UCLA trial IS for MGMT negative tumors, but the timing was off.  The most important thing is that Darrell get standard of care treatment, which is radiation with simultaneous chemotherapy (temozolomide), as fast as possible; we couldn't delay treatment awaiting marker results.

So today was a pretty tough day.  Here are some bright spots.

1. Dr. Park is calling around for other clinical trials for MGMT negative tumors. 
2. Regardless of any markers, Darrell is getting aggressive treatment--as fast as possible.  GBM is very fast growing, so this is critical.
3. We appreciated the visit by dear friends, HBT.
4. Dinner by G was fabulous...so appreciated!

Thank goodness for the bright spots.

Our Take on Clinical Trials

• As you know, Darrell is very much interested in participating in a clinical trial (we're "Pro" clinical trials).
• However...they are not a replacement for standard of care treatment. Good care with scientific evidence is the most important thing right now to fight the disease.
• Half the people in a clinical trial do not get the experimental treatment, and the experimental treatment is (by definition) unproven.
• We are still, by the way, going to head to UCLA for a consult.
• Some of you are on the look out for appropriate clinical trials for Darrell. You go. If you're checking them out, you'll want to know Darrell's stats: GBM, primary tumor (not recurrent), MGMT negative (if they mention MGMT status being a variable), and he'll be post treatment (chemo and radiation)--in the maintenance phase.  Check out any trials you find at clinicaltrials.gov  You can see their status, as in whether they are currently recruiting.  (Some of you cope by researching; this final bullet is just for you.  If you cope in other ways, keep on coping.  As we say, Dr. Park is actively searching for trials.)

Thanks for reading.  Tomorrow has got to be brighter.

Brain cancer is...

...A changing scalp landscape.

Even though we all mourn the loss of the staples, I think we can agree that the resultant scar is pretty impressive, as is the reverse orthogonal mohawk we see now that Darrell's hair is growing in.  We decided to post this progress pic now because Darrell's scalp is starting to get irritated from the radiation, and this can only mean one thing:  More exciting scalp changes in the near future!  

He's to expect hair loss, but with a conundrum.  Most people choose to cut their hair very short in preparation for impending hair loss, but the radiation therapists  (side note:  if that were my job, I'd choose a different label, say, X-ray Gunner Woman) told Darrell that the fit of his mask would be affected if he were to cut his hair.  Hmm.  How does the hair falling out of its own accord NOT alter the mask fit?  We have questions to ask, clearly.

Updates

Darrell appreciated a couple days off of radiation.  He's taking a medication that completely controls nausea, and the chemo isn't yet affecting him noticeably except for some fatigue.  They tell us to be prepared for cumulative effects of both radiation and chemotherapy, most specifically pronounced fatigue that is at its peak in the weeks right after treatment.  Last day of combined therapy:  April 8.  That's just around the corner!

Bonus Content

In finding yesterday's pic, I ran across this one I took of Darrell on the same vacation to British Columbia.  It's a 10-year old shot of the scalp in question.  It's also me sharing my husband's hunkiness under the pretext of scientific observation.

(Author's note:  Darrell helps select content and reviews/edits every post before we publish.  I barely got this part of the post past his editorial standard.  But he really is hunky.)

A Final Note:  How to Correctly Read this Blog

Never mind!  You're already doing it right!

Some of our loved ones tell us that they like to read but don't comment in the blog because they feel uncomfortable, don't know what to say, or would just rather keep it on the down low.  Sometimes they sound like they feel a little guilty, like it somehow takes away from their support if they don't comment in the blog.

If you see these loved ones, please tell them that there are so many helpful ways to participate.  Some people like to comment in the blog.  Great.  Some people text or email us in separate conversations after a post.  Awesome.  Some people just read and empathize.  Super good.  We value all of these ways that people are interacting with the blog; we are honored that people continue to care!

We are also learning that different topics or formats are helpful or interesting to different people.  Except for staples.  Everyone loves staples.  That's been a good lesson for us too--we are all experiencing  this a little differently, and we're all doing it right (or at least there's no one to tell us we're doing it wrong).  Nonetheless, if there is something that would be helpful for you to see or hear, please do feel free to suggest it.  We really are a team.

Brain cancer is...

...a roll call for angels on earth.

This picture of my sister, Meridyth, and me was taken on a family vacation to British Columbia in 2006.  (Twin dressing is COOL!)

Eight years before this pic (1998), Meridyth was diagnosed with metastatic breast cancer and was given a 40% chance of surviving five years.  Her kids were about two and four at the time, and I remember one of her biggest concerns was that she would not live long enough for her kids to remember her. 

Look again at the photo and you'll see that Meridyth is wearing a long chain with a medallion.  Right after her diagnosis, her friend Nancy gave Meridyth that medallion.  It was a guardian angel to watch over and protect Meridyth throughout out her treatment.  Meridyth is nearly 20 years beyond her diagnosis now, and she continues to wear that medallion--and two more angels who joined the first--daily.

I should say she wore them daily (past tense), because last week Meridyth and Matt sent us a care package.  Inside that package were Meridyth's angels. She said good bye to them and sent them forward to now protect Darrell in his cancer journey.

I'm sharing this story because it includes such an act of selfless kindness and care.  But I'm not sharing it because it stands alone in its beauty and power.  Darrell and I also wanted to share it because these three angels (and the people who sent them) represent the dozens and dozens of angels offering selfless, loving acts of kindness to Darrell and to us, his family.

Truly we have experienced great love fully in the past month.  Each of you has a different style, but every one of you has convinced us of the existence of angels on earth.  Your texts, cat pictures, meals, tokens, calls, hugs, prayers, errands, e-mails...all of them...touch our hearts and make us feel lifted up by the best that humanity has to offer.  When the angel roll call begins each morning, please perk up your ears, and when your name is called, raise your hand, and say, "Here!"

Friday, March 4, 3:13 p.m.

Brain cancer is...

...One of only about five reasons Darrell will go the movies.

But look what happened to the movies while we weren't there!  Recliners?  Waiters?  What took so long?  We saw Revenant. There was much to like about it.

It has been a great week, with Tiana and Alex home with the rest of us.  We've had lots of family time, walks, games, and visits, and we're ending the week with an evening by the fire.  We are grateful that they had spring break to spend with us, and we look forward with anticipation to their return for some time next year.  Fingers crossed.

We are also grateful for all the support you provided that allowed us to focus on family time rather than cooking and other tasks, and thanks for brightening our days with your many happy thoughts in all the different forms they took.

 

Brain Cancer is...

...a major life shift.

 

Wait!  Before you click away, thinking you'd read Captain Obvious's blog if you wanted old news, hear us out.  Yes, everything changed with the sudden crashing shock of Darrell's diagnosis.  But today we learned that the "life is forever changed" lesson is one that we'll need to keep learning.

 

Darrell said these words ("Brain cancer is a major life shift") as we were climbing into the car for our second trip of the day to the cancer center. That's the new normal for us, for now.  We reflected again how our fight against brain cancer is now the center point of lives.  Everything else (everything!) just needs to fit into the tiny spaces around the edges.

 

The saying, "Life is about the journey, not the destination" is so true that it's trite.  We've been trying to shift our philosophy away from outcomes, deadlines, and success markers for many years.  Now we're realizing it's journey with a small j--the journey is in the day-to-day experiences.  Life's about the journey of March 3, 2016.

 

Daily Updates

• Darrell completed Day 4 of radiation. He's tolerating it well.
• The mask's mouth breathing hole wasn't as awesome as he had hoped, but it's something.
• We saw Dr. Park, the oncologist. No news from the Mayo clinic on tumor markers yet. It's not urgent because all clinical trials are after the "treatment" phase of chemo and radiation and fall in the "maintenance" phase of just chemo.
• Darrell walked a full hour in the pic above.

 

 

 

 

 

 

 

 

 

Brain cancer is...

...rich ground for great quotes.

Today's quote is brought to you by Darrell, who says, "I am happy about my mouth."

We see the radiologist, Dr. Dolkar, each Wednesday after Darrell's treatment.  When Darrell mentioned that he had perfected his super hero skill of breathing through his teeth, Dr. Dolkar told him that they can open up the section of his mask that covers his mouth.  He left, smiling to himself, "I am happy about my mouth."

The Big Fat Baby crawled into our bed in the middle night and stuck around all day, cranky and wanting to be carried.  So I'm worn out. 

Perhaps this is yet another good reason that super heroes have...

Photo:  Wednesday, 3/2/16 12:00 p.m.

...super hero posses! 

And this is only the front line!  Thanks also to the many posse members who offered support today.  Just incredible, and we never take it for granted.

Mosaic Mural Update:  I read the signage today, and those parrots actually do represent our Fullerton parrots.  Further, the mural was created by Fullerton School District students under the guidance of local favorite artist, Katherine England.  I've taken Katherine's classes, and her daughter was a grad student in one of my classes.  This gives me a new appreciation of how people are connected in surprising and wonderful ways and that people who create art really do touch the future.  During the many interactions I had with Katherine, I had no idea that she led this beautiful work.  For me it lay dormant until chance brought my family to it and it made us smile during a tough time.

 Photo:  Tuesday, March 1, 2016 11:34 a.m.

Brain cancer is...

...a chance to revisit classic colors!

Turns out Darrell was onto something with that classic gray. He's got me thinking...

Meanwhile, in other news:  Today's Updates

• No BFBC Baby.  Phew.
• Treatment 2 out of 30 went well.  Darrell learned to breathe through his teeth.  This super hero skill should make treatments 3-30 in the mask even easier.
• The ray gun's official name is "linear accelerator."  It uses high energy x-rays, not gamma rays.  Huh. It costs about $3 million.
• Tiana had Darrell ask whether the linear accelerators in Treatment Rooms 1 and 2 have friendly pet names.  Not yet.  I think Team Darrell might be able to brainstorm some useful suggestions, yes?
• Gratitude journal entry 1:  I am grateful to the Cancer Center personnel and artists who had the foresight to place such a beautiful, uplifting mosaic mural in the entry of the treatment facility.
• Gratitude journal entry 2:  We are particularly appreciative that the birds in the mosaic are parrots.  Fullerton has a flock of parrots that, with their squawks, remind us that we are home.  

• Zach tidbit:  Parrots are highly intelligent and live in complex social structures.  Thus they have a high need for sophisticated communication skills. Those "squawks" apparently convey lots of information to flock mates, including noises that represent individual birds, just as we call each other by name. Thus, parrot flock behavior is much like the behaviors of Team Darrell, a complex organization of highly intelligent, sophisticated members. Love you.