Photos:  1:31 p.m. Monday February 29, 2016

Brain cancer is...

...for super heroes!

Here's that long-awaited Darrell Hero Mask.  Some points of interest:

• Notice that it's bolted to the table.  
• The lasers are for precision sighting.  
• The special ray gun (I'll find out the real name tomorrow) is shown in Pic 3.  It's behind Darrell in the pic, but it revolves around him so that the radiation, although focused on the tumor, is delivered from many entry points.  This reduces potential damage to healthy tissue.

Brain Cancer Treatment Surprise! After completing the simulation, they delivered Darrell's first radiation treatment.  Phew!  That made us all happy because Darrell and his team (including you) can't worry again tonight.  You're probably wondering, as we did, whether it's okay that he doesn't start the chemo until tonight.  Dr. Dolkar said it's fine.

A total of 30 treatments, only 29 to go!

Gratitude journal entry:  How many hundreds of millions of dollars for that machine? Thanks, medical technology (brought to you by Alex).

Thanks for your good radiation wishes!

Brain cancer is…

…a time to reflect on your choice of the Word of the Year.

When your family starts a Sunday morning with brunch at El Torito…

…you can pretty much count on a lazy afternoon. 

And that’s what we have here: a quiet, peaceful day.  Darrell is ready to go, eager to proceed with the next phase of treatment, but the pre-game for that is tomorrow.  Today we have a bit of space to reflect.

Word of the Year

For a few years, some of us have been choosing a Word of the Year each January in lieu of choosing resolutions, which, once broken, are useless.  The Word of the Year is a word that you choose to set your priorities and shape your decisions.  (Want more information?  There are many you can ask: Lu Ann, Roene, Kristine, and Ruth, for example.) 

This year Darrell and I chose “lean.”

We read it both as an adjective (lean = spare, trim) and as a verb (slant, bend forward).  We wanted our 2016 lives to be “lean” in that we would finally donate all our extra stuff, unsubscribe from all those commercial emails (good bye, Pottery Barn!), and focus on our important priorities.   

In our version of “Word of the Year,” you are allowed to ditch a word and choose another if things just don’t work out between your word and you.  However, Darrell’s diagnosis has reconfirmed our commitment to our word lean.

First, “lean” as an adjective is the perfect word to remind us to focus on what’s important:  Keep life “lean” and let go of the extraneous bits.  As each of us has experienced in the face of sickness or strife, that’s a particularly shiny silver lining to adversity, isn’t it?  To see with clarity what’s important?

Second, “lean” as a verb is the perfect word to focus our efforts in the coming months.  It’s so easy to live life with the illusion of control.  We’re all movers and shakers; we make things happen, right?  It’s easy to maintain that illusion until a reminder of our fragile limits--a reminder like an accident or a serious diagnosis--comes along.

Darrell and I are wrestling with the loss of the control we thought we had.  But he and I will figure it out, as we all do.  Maya Angelou said, “If you don’t like something, change it.  If you can’t change it, change your attitude.” In so many cases, all we can change is our attitudes. All we have is our responses to life's events.

We are planning a treatment course as aggressive as medical science allows.  We’ve got a myriad of family and friends doing all they can to support us in so many ways and send up their prayers, good wishes, points of light, all of them, in Darrell’s behalf. 

And finally, we’re leaning into changing our attitudes to meet the challenges ahead, to bend with the forces that shape life, and to continue making memories every day.   So much laughter, so many memories to cherish every day!  Thanks for making them with us.

Tomorrow's Pregame Schedule

• Antibiotic pills begin (a.m. and p.m.)
• Radiation simulation (1:30 p.m.)
• Chemo pills begin, 7 days a week (p.m.)

 Today's Shirt Choice:  RS-T (turquoise)
 

 Saturday, February 27, 2016 2:32 p.m.

 

Brain cancer is...

...family reunion time.

Alex and Tiana are back in town!  We are so happy to see them and hear about future plans for some of their fourth year of med school to be spent here.  They are not minding the 80+degree weather: Spring break in the OC with so many cool stripes!  RSS (Rainbow Shirt--Stripes).  Summer is holding down the study fort.

Happy Saturday, Friends.

Brain cancer is...

...as good a reason as any to hang out with the parents on a lovely Friday.

 

We started the day with Gordon Guillaume at our favorite breakfast spot on Glendora Avenue, the Village Eatery.  We eat here together at least a couple times a month.  It's our thing.

We had lunch with my mom, Lu Ann, Berthel, at her home.  Mom, you make a delicious duck!  Sitting on Mom's terrace is also our thing.

Did I mention it was a lovely day?

 

We hope your day has had some lovely aspect to it and that the weekend is all you desire!

Big Fat Brain Cancer Baby (BFBCB) Epilogue

i hope I didn't  frighten you with tales of the BFBCB.  We want you to be able to sleep at night.  The baby isn't always a big problem.  For instance, today it just kicked Darrell about the ankles a bit.   The baby is a necessary part of the experience, I think.

Photo: Thursday, February 25, 2016 9:41 a.m.

Today’s photo depicts a boy with his chemo drugs.  I am at a loss for what to say about the outfit. A man’s gotta wear what a man’s gotta wear.

Brain cancer is...

 …a big fat baby.

 Specifically, brain cancer is some otherworldly infant with a mercurial disposition, throwing a temper tantrum one minute and giggling happily the next.  Worse yet, brain cancer is the kind of big fat baby who messes with others’ emotions. 

We know about the big fat brain cancer baby because our emotions seem to be highly changeable, and they come on at will and unexpectedly.  Our only conclusion?  Some diaper-wearing despot is in charge. 

I have several family members who admit to being well acquainted with the big fat baby, but I don’t have rights to their stories.  So here’s an Andi-centric story from today.

Andi’s Thursday with the Big Fat Baby

I wake up in the sunshine (yes, the gorgeous linen curtain is partially open) to the face of my spouse of 33 years.  He is so beautiful, I start to cry. My snuffling alerts him, and when he turns to look at me, his face says:  “Rrruh Rrroh.  This one is nuts. Who cries before a day even begins?”  But he smiles, pats me, and tells me that I’m not wearing my glasses.  (More about the baby:  He bullies us separately so that our emotions are out-of-sync; one person is feeling weepy while others are hopeful, excited about burritos.)

I get to campus for a faculty consult…without my wallet.  Further desolation.  This is a consult over coffee, and I really need a latté to pour into my morning’s emotional wounds.  “What a bad, bad day!” I text Darrell, who is no doubt happy that the crazy woman he married is a safe distance away from his busy morning.  Those who text with Darrell knows that he’ll respond, despite his schedule.  Further, you know that his response to my text says:  “Sorry!”

Then my consult faculty member arrives, and she offers me a latté.  Gratitude Journal Entry!  Just like that, it’s a good day. Stop messing with me, Baby.

Back home, I put the chemo drugs into the pill dispenser, getting ready for Monday.  I realize that I forgot one of the drugs, and I spend a few minutes despairing over the repercussions for mistakes I might make in dosages.  Yes, Monday is a long time from now and we would have double-checked, but that’s rational talk.  The Baby’s talking now.  Zach and Darrell gather around the pill dispenser for training, and we’ve now got several layers of safety built into our family chemo-pill dispersal plan. 

At 2:00 p.m. Darrell hangs the kitchen blind (busy, busy Darrell!), and life is back to normal.  Bye bye Baby...see you at 4 (it turns out, but that's a different story).

The Good News

Even though our emotions seem often mercurial and out-of control, we’ve studied them a bit and recognize a clear pattern.  We agree that whenever we face some emotional low, what follows next always seems to be a high, some moment of grace where the people who surround us reach out and lift us up.  Your emails, texts, hugs, calls, treats—every sweet thing you do—always comes just at the right time, right when we need a hand to pull us away from the big fat baby.  How do you do that?

Photo: Wednesday, February 24, 2016  10:24 a.m.

Brain cancer is...

...no longer about the staples.  Dang!

Best Physician's Assistant ever:  Before I asked, she bagged up the cool staple remover and Darrell's 12 little staple friends and offered them as a souvenir.  I didn't even need to think of a plausible-sounding excuse for your ghoulish habits (which match ours, of course).  Here you go:

Right now they are all bagged and sitting next to the gratitude journal.  Probably not a permanent storage place, but fitting.  More good news from the day:

• Darrell was cleared to drive.  (Darrell as patient = awesome.  Darrell as front-seat passenger = not awesome.)
• He was cleared to lift more weight (carefully).
• Chemo meds are being overnighted, to arrive tomorrow.
• Shortly after the above photo, Darrell changed out of the gray garb into RSY (rainbow shirt yellow).

So many good thoughts and wishes from you today.  We hope you know what a difference they make. 

Brain cancer is...

...not the only thing going on in life.

Oops.  Sorry.  I forgot.  How are you?  How's work?  The kids?  The pups?

We really do appreciate you and your full lives. We are thinking of you and yours.

Here are some moments from our day.  Above is a pic from our walk today.  Darrell walked nearly 3 miles.  He's been given the go-ahead...as long as we remain on flat ground.  Yes, Raymond friends, you recognize. We thought of you and sent happy thanks your way as we flew past.

And check out this Rainbow o' Shirts:

It's true.  Big D let his wife pick out a new tee shirt wardrobe.  Yes, it's also true that if you look closely you'll see that they are all v-necks, but I need you to focus here.  How many gray shirts?  Zero.  A raaaaiiinnnbbboooow of shirts!

And here's one more image for the day:

Check out those gorgeous blackout-lined white linen drapes.  Darrell finished hanging them today. They are just about the finishing touch for our romantic bedroom remodel.  When you come over, we'll let you open and close them AND try the hold backs.  Yes, they puddle.

In these moments and in writing thank you notes today we were again in awe of how much we have to be grateful for.  So we started a gratitude journal.  It's on the coffee table.  When you finish playing with the drapes, feel free to add an entry.  Maybe you'll add it to the page where you'll already find your name.  Thank you.

Monday, February 22, 2016  1:07 p.m.

Brain cancer is...

...a game for the players.

Today was the pre-chemo appointment with Dr. Park, seen here. In case I didn't tell you Dr. Park's helpful words when Darrell was still in the hospital, here they are.  Dr. Park told us that if GBM were a football game, and you were a bettor, you wouldn't take the odds.  However, if you are a player in this GBM game, then you play to win.    

In short, here's the game plan.

• Staples come out Wednesday 2/24.  (Sorry fans!)
• Radiation simulation (dry run) is Monday evening 2/29. (That's gotta be Leap Year Lucky!)
• Chemo begins Monday night 2/29.  (The chemo is an oral pill that basically makes the brain cells more responsive to the radiation.)
• Radiation begins Tuesday 3/1.  (It runs M-F for about 6 weeks.)

Thanks, family and friends, not only for your caring support but also for your diligence in checking out clinical trials. The biggest news in oncology these days is immunotherapy based on targeted genetic results.  Darrell's tumor cells are being analyzed at the Mayo Clinic right now, to determine whether he has the positive or negative version of a certain genetic marker.  In either case, he'll be a potential participant for clinical trials, one associated with UCLA.  Also, Dr. Park is sending us to UCLA for a second opinion with a renowned GBM specialist, Timothy Cloughesy.

Sometimes brain cancer is...a little much.

Brain cancer is...

...still on on hold. 

Back home in Fullerton after a beautiful weekend.  Keeping the vacation going in the backyard.

Zachary points out also:

Brain cancer is...

...enough of a reason for Darrell to eat shrimp four days in a row.

This pic is Shrimp Day #2, grilled shrimp on a skewer at the Fisherman.  For the inquiring minds:

Shrimp Day #1:  Shrimp scampi at Fratellinos.

Shrimp Day #3:  Shrimp al mojo de ajo at Avila's El Ranchito

Shrimp Day #4:  Shrimp spring rolls and shrimp chow mein at Thai Basil.

So many countries!  So much shrimp!  It's work, but someone's gotta do it.  Go Darrell Go.

Saturday, February 20, 2016  10:18 a.m.

Brain cancer is...

...on Trip.

Uber to Mexican food, Jacuzzi, now hotel TV. Love y'all.

February 19, 2016 2:48 p.m.

Brain cancer is...

...the best reason ever for a do-over weekend.

 Darrell wanted a diagnosis-free, doctor-free weekend--just one--to replace his previous weekend.    Love the way this guy thinks! Hellooo San Clemente.

Just because you're wondering:  The super hero face mask is finished (40 minutes in the making), No cape, Geoff. Staples are still looking fly, and the Department of EDEL at CSUF soars.  

Also rocking it:  T Dal!  Congrats on your nomination to the honor society--They would be lucky to have you.

So...don't be sending your cancer thoughts this way this weekend.  Enjoy your sunshine and the people who love you.  That's what we're doing, for shizzle.

Thursday, February 18, 2016 3:28

Brain cancer is...

...a free parking pass!

Cancer adventures couldn't get much better. But really, today was a forward-looking day.  We met with the radiologist, Dechen Dolkar, for the initial consultation.  Here's the abstract of the plan:  Concurrent radiation and chemotherapy as soon as those popular staples are removed.  Radiation will be five days a week, M-F, for 46 days. 

Fun radiology facts:  

• Incredible advances in brain imaging make radiation therapy very precise today.  The doc will fuse pre- and post-op MRIs with a CAT scan she takes tomorrow, then cut the resulting 3D image into  3 mm slices to plan the precise course of radiation.
• Zach will take Darrell in tomorrow to have his super hero mask made and to get the planning CAT scan.  The mask will hold his brain vewy vewy quiet during each 2-minute radiation session.
• Darrell's radiation will be measured in the unit of "grays."  

We were reassured by the doc's demeanor, precision, and reading of past scans and post-op recovery notes.  Every MD we see comments on Darrell's youth, strength, and good response to surgery.  

Tell us something we DON'T know, right Team Darrell?

Wednesday, February 17, 2016 6:50 p.m.

Brain cancer is...

...an invitation to create fun yet helpful emo family party games!

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."

We find that once individuals are lost in their new emo-territories, they often become disconnected from other family members, and everyone feels a little bit worse.  So we invented a game!  Yippee!

Two Rules  

Rule One:  Every day (or portion thereof in the face of major shifts) one must check one's emotional experience, perhaps asking oneself questions such as:  "Where are you?" "How is today?" No deep introspection or lengthy descriptions necessary.  Just a label:  "Fragile/tired bad,"  for instance.   Or "Super stoked by Sees peanut brittle as a vegetable substitute!"  (Brilliant, BTW, BLBC)

Rule Two:  If someone asks you where/how you are, you have two choices.  You may decline to state.  No penalties.  Or you may tell the truth:  "Fragile/tired bad."  "Super stoked."

Of course if you're the one doing the asking, you need to decide what to do with a response.  No rules here, but what's working best for us is just quiet listening and a nod.

This game clearly has much potential for the cheater (just lie!), but we haven't had that problem yet.  Maybe because everyone wins when they play.

We were so impressed with our game that our marketing plans were completely derailed when Darrell received the radiologist's version of this game with his intake packet.  This version is called, "What's your emotional distress temperature?"

Apparently we were on to something with our game.  We like our version better.  We feel judged by that scale.  Zero distress? What brain cancer patient or loved one has "zero distress"?  Chuck Norris is the only possibility.  You mess up the scale for the rest of us, Chuck!


You choose your version, though.  Or make up a new game.  Play along.  And try the peanut brittle solution!

Tuesday, February 16, 7:44 p.m.

Photo:  Wednesday, February 10, 10:22 a.m.

Brain cancer is...

...egg shaped.  

Two reasons for this photo:  1.  Darrell woke up today, horrified that he'd show you the repair before showing you the problem.  2.  Staples were a local crowd pleaser.

Now that we see Darrell is leaning toward the physical manifestations of this journey, I think we should all buckle up and get ready for chemo/radiation photo possibilities.  I'll have to put a warning label on our blog.  (PS...He says "Don't even ask about the catheter."  Please.  Don't.)

And I still demand my take on the day:

Tuesday, February 16, 11:31 a.m.

Brain cancer is...

...more important than campus.  

And yet, here I was.  It was jarring  to consider the world outside the bubble of home events.  How to save time grading student papers? Let's put that topic on the importance scale.  I wasn't the only one living through this day back on campus.  I checked:  No one else at home found it easy either.  All the things...all at once.

The only person who actually wanted to go to work wasn't allowed to drive.  Thus I realize I have much to appreciate:  The opportunity to work...at a flexible job...where people are trying to do the best they can to help students learn.  This day also made me appreciate A & T and all y'all who are keeping on keeping on.

Finally:  Thanks to all of today's earth angels. You know you, Homies.

Monday, February 15, 2016  2:21 p.m.

Brain cancer is...

...healing nicely.

Darrell chose today's entry.  He was sure you'd want to see how the incision is healing.  I wanted to zoom out so you could see his smile, but he said, "No!  Give the people what they want!  Staples!" So even if you didn't want staples, feel free to make an appreciative noise here.  Also appreciate how clean his hair is.  Can't tell you how great he felt to wash his hair after a week.

You can see that the cut is about 4 inches in length. Under the incision is apparently the round piece of skull removed during the craniotomy, then returned to its place and held there with little titanium plates and screws.  He can (and did) still have an MRI, no problem.  And they say it won't be a problem at airports. As Darrell's thinking of lots of fun trips, we'll have ample opportunity to test this assertion.

We did lots of cancer errands today (dropping off paperwork, making appointments, ordering chemo meds), and it gave me another way to complete our blog prompt today:  Brain cancer is... a reason for people to be nice to each other.  Everyone we talked to was so nice:  polite, friendly, and patient.  One even said, "I'm sorry for so many questions.  This is the last one, I promise."  

I'm thinking it might be a good rule to guide my behavior:  "Be nice to strangers.  They might have brain cancer."  I know you're thinking that the staples give a good clue, but I'm thinking we can't always rely on the visual hint.  And why wait for a diagnosis anyway?  I'll try this rule out and let you know.

Sunday, February 14, 2016, 3:16 p.m.

Brain cancer is...

...celebrating Valentines Day.

Here's the lesson, kids.  Life is simultaneous, not sequential.  Things don't happen one at a time.  And they don't sort  into "bad" and "good" things.  In life, everything happens at the same time:  Very bad things, very good things, typical things, unimportant things, huge things, tiny things, personally significant things, annoying things...all of the things, all at the same time. 

So please don't feel guilty celebrating the holidays.  [Shout outs:  Thanks, Beth and Geoff, for the velvet undies and a great Valentines Day lunch.  Thanks, TSQD (and Mo), for the massage of the year.  Thanks, Mer and Matt for the great memories of last year's VDay.  Thanks, Melanie and Gail, for the offer to visit.  Rain check!]

And also celebrate every single happy moment of awesomeness that comes your way.  Alex:  congrats on the honors society nomination.  Heck yeah!

There are plenty of tears all around, we know, but it shouldn't only be tears, right?  Keep celebrating.  We certainly plan to.

February 13, 2016  10:07 a.m.

Brain cancer is...

...running a couple miles instead of punching someone in the face.

I took this photo of my feet to tell Darrell's feet that I'd be doing the daily steps until his feet were back in the game.  And then it turned out I just wanted to punch someone in the face.

Friday, February 12 2016 1:32 p.m.

Brain cancer is...

..enough of a reason to change my official policy on miracles.

I love both science and a good quotation, so I have always cherished Albert Einstein's sentiment:  “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”  

I have attempted to live a life in witness of miracles.  I saw the miracle of my children's tiny newborn feet, and now I marvel at their grown manhood.  I have seen the miracle of spiderwebs and of Canyon De Chelly (thanks Roene).  For 53 years, I have never asked for the other kind of miracle, the kind of miracle that beats the odds.  Today is the day I ask.  I will take one of those one-in-a-million sorts of miracles.  

Friday, February 12 2016  12:04 p.m.

Brain cancer is...

...a reason to marvel at human goodness and the power of friendship.

Even before the diagnosis, all y'all flooded us with with your prayers, guitar twangs (thanks Charlene and Ryan), good thoughts...everything good and full of love...through texts, emails, and calls.  We've learned this lesson with earlier family medical crises, but we were in awe when it was our turn to be lifted up by hope, strength, and support from family and friends.  We know you are in shock and struggling to place this thing into your mental  category of "bad things happening to good people."   Here are our hugs as you work it through.  Thanks, CSULA College of ECST for this beautiful reminder of Darrell's influence at work.  He's coming back.  He'll say thank you when he sees you in the halls.

Thursday, February 11,  2016  6;51 p.m.

Brain cancer is...

...the only excuse around to flood the laundry room.

I put the clothes into the sink, turned on the water, and walked away.  Thanks to my sister Meridyth for her floor conclusion:  "very clean."

Thursday, February 11, 2016  5:01 p.m.

Brain cancer is...

...a reason to invent awesome new family traditions.

It took 30 minutes to fill the prescription for Darrell's pain meds, so Zach and I chose the most outrageous chips and invented the Great American Chip Off.  We served the chips wine tasting style.  Sorry you can't celebrate until next year, but when it's time (February 11), we hope you too will enjoy poor nutrition in the name of BCT (Brain Cancer Traditions). 

Wednesday, Feburary 10, 2016  9:27 a.m.

Brain cancer is...

....44 minutes in the making.  

GBM is "surgically incurable." In 44 minutes, Dr. Bradley Noblett did all he could to remove the tumor while still leaving the speech and movement areas of Darrell's brain intact.  The tumor was about the size of a golf ball and was a mini water balloon, Later we discovered that enough tissue was reserved for further genetic testing.  Thanks, Brad.  And thanks, Dr. Park, for your vigilance from the start.