Monday, February 29, 2016

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!

Sunday, February 28, 2016



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

 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.

Friday, February 26, 2016

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.

Thursday, February 25, 2016

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?


Wednesday, February 24, 2016

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. 

Tuesday, February 23, 2016

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.