New Things

Brain cancer is...

...continuing to bring new things.

Darrell's MRI went fine today, and it brought new information and experiences.

We checked in at the Cancer Center, and they told us that Darrell's scan would be at the hospital because he was getting an additional test today.  News to us!  So we walked over this bridge for the first time ever:

 In the stairwell, we found this wonderful, joyous mosaic:

It's by the same artists as the parrots (Katherine England and FSD students).  Can you read what the largest circle says? Here's a close up.

What a treat.  When we checked in at Admitting, I got this badge:

When did personalized visitor ID badges happen?  We haven't been gone that long!

Perfusion MRI

After an hour's wait, which added a bit of anxiety, Darrell sailed through the 45-minute procedure.  He says the hardest thing is to hold completely still the whole time.  MRIs in the Optune days mean that we remove the arrays just before he goes in, and we change them as soon as we get home.

The additional test was a perfusion MRI.  New word!  Perfusion!  Darrell had his typical scans with and without contrast (dye) too.  What we learned today is that those "typical" scans are considered static; the tumor cavity will always look "abnormal" (brighter than surrounding tissue). It can't be determined through those scans whether the abnormalities are due to necrosis (expected tissue death caused by treatment) or tumor regrowth.

A perfusion scan is a dynamic test.  They inject a different (nuclear) contrast into Darrell's arm and then scan his brain as the now-marked blood travels through it.  This is helpful because brain tumors are highly vascular (lots of blood vessels), much more vascular than the surrounding brain.  So the perfusion scan detects the presence of blood vessels, which can signal tumor regrowth instead of necrosis.

We learned all this before noon!

Darrell's next appointment with Dr. Park is in a week, to coincide with the next round of double dose chemo.  Dr. Park will read the scan then.

The radiologist's report of the scan will probably appear in Darrell's patient portal before then.  To read or not to read... 

Thanks for your good wishes and selfie kisses.  We hope you are enjoying your Tuesday.

Family!!

Brain cancer is...

...more celebrating!

We had a great Memorial Day with family.  We thought of your family members and friends, passed now, who served our nation.  Thanks to them all.  We hope you are having a great Memorial Day.

Breakfast with Gordon and his flock.

Granny Annie (LuAnn), who hosted lunch

Counter clockwise:  Darrell, Grannie, Gail, Katrina, Levon, Melanie, Madison. 

 Tomorrow's cancer agenda:  Blood work and MRI (two months past "treatment").

Friends!!

Dinner out...in a limo.  Thanks Curt and Barb!

Brain cancer is...

Beth and Geoff, purveyors of fine eye wear, friends we met a month after our wedding.

 

Barb and Curt, also friends of very long standing.  Darrell and Curt were friends starting in grade four.  They were best men in each other's weddings. Barb is also awesome and is Beth's sister.

..appreciating many years of friendship. 

Mousse Capades

Brain cancer is...

Mousse capades

 ...stepping aside for puppy pictures today.

While Darrell and Andi were enjoying our train adventure, Summer, Zach, and Mousse had an adventure of their own:  Carpinteria to visit Mousse's other Grandma, Sue.

Puppy pictures just never get old (at our house, anyway.  Sorry if your house is different.).

Arrrrrray We Go!

Brain cancer is...

 ...a chance for Optune word play!

Here are the arrays, placed with the new, personalized maps. To celebrate?  Word play!

• Darrell's word play:  "Up, up and arrrray we go!"
• Summer's word play:  "Hip, hip, array!"

Three more additions on the topic of anniversaries and love:

1.  Here we are having fun at the Pint House for our anniversary last night.  Selfie silliness. It was the first (of many to come) day of fun in Year 33.

 

 2.  Today Darrell joined me in the waiting room at our dermatologist for my routine "freezer burn" appointment.  I told our doctor about Darrell's diagnosis.  After hugging me, and despite him being behind schedule, he joined me in going out to the waiting room so that he could hug Darrell and give his best wishes.  Darrell was very touched by the kindness.  It was another small act of love added to the apparently endless great kindnesses that populate Life 2.0.

3.  Dear friend Teresa was reading the 100-lessons blog post and sent us her lesson.  Teresa lost Deborah to lung cancer, and she allows us to share her lesson here.  Thanks for this empowering lesson, T!


"Cancer is a great destroyer, but it cannot destroy love. (I still get to feel my love for Deborah every day--ha ha cancer!)" 

Celebrating 32 Years

Brain cancer is...

 

...celebrating every minute of 32 years of marriage.

Today's our anniversary.  Yippee!  We just did the math.  We've been married for 60% of Andi's life and for 58% of Darrell's.  If we add the five years we dated, those percentages go up to 70% and 67% of our lives spent together.  We're rich!


Here's our wedding program:

At 21 and 23 years of age, we chose the verse (from the Bible, the book of John) because we so valued love.  Thirty two years later, our appreciation of these words remains.  Our appreciation of love, in all its varieties, is infinitely deeper.

We feel rich to experience the marriage we have, and we feel rich to belong to a community of family and friends that is so very, very full of love.

Thank you!

Terra Cognita

Brain cancer is...

 ...terra cognita.

Here's Darrell's new set of Optune maps.  Good news:  No hockey mask placement.  In the lower right map (face forward), you can see that we'll place the front array at a jaunty angle and slightly off center. 

In the lower left map, you see that we will shift the side array up away from the ear, toward the top of his scalp.  Asymmetrical fashions are all the rage this season, right?

Darrell's work on the shoe is also now a mystery solved:

He was gluing the sole back to the upper layer.  Good thing for all those clamps.  Success!

Happy Hump Day, Team D!

New Battle Map

Brain cancer is...

...getting a new battle map.

Above is an image of the maps we use to place Darrell's arrays.  They are generic maps.  Today we learned that Novocure (the company that makes Optune) has received the MRI scan we overnighted and is making personalized maps for array placement based on Darrell's specific tumor location and MRI results.  Darrell's a little worried that the arrays will be need to be stuck all over his face like a hockey mask instead of discreetly hidden under his cool fedora.

Side note cool cancer fact:  At the Novocure site, I read an article stating that yesterday Novocure just enrolled the 20th of 20 patients in a clinical trial for Tumor Treating Fields technology (the basis of Optune) now for patients with advanced pancreatic cancer.  Fascinating!  I lost my dad to pancreatic cancer, and we know that many of you, our friends, have also been touched by this devastating disease.  Here's hoping that the technology might eventually provide an effective weapon for patients battling this killer.

My first day at my "summer jobs" was today.  Darrell wanted you to see how busy he was while I was at work:

We're not sure how much information you want about this.

Finally, a public safety announcement:  Do not be frightened by this Mousse look alike by our front door:

It's a solar welcome dog.  All the cool kids have one.  Thanks, Linda, Brady, and boys.  Love it!

Appreciating

Brain cancer is...

...appreciating.

We are back in Fullerton after a perfect trip.  To catch you up on our escapades:

• We had a great Saturday in Chicago with Meridyth and Matt...

• ...before hopping on our train and meeting more new friends.

Diana and Chris, from TN, celebrating their 10th.

•  We ate more delicious meals and saw more stunning scenery.

Somewhere near New Mexico/Arizona border

•  We arrived home this morning and celebrated with an array change.  

(Because you're missing Darrell's head, I know.)

 Darrell managed Optune like the super hero he is, and he's feeling great. 

Our trip leaves us with the lesson that there is much that is right and good in the world.

Thanks for being a part of it!

On Pause

Brain cancer is...

...on pause.

Our train trip is making everything feel wonderfully suspended. We're tucked away into our room, watching the scenery roll by, lulled by the sound and motion of the train.

We're pulling into Albuquerque now and will enjoy one more nice dinner this evening.  

More tomorrow, with pictures, from home.

Warm wishes for a restful Sunday.

Good Bye Chicago!

Brain cancer is...

...saying goodbye to Chicago.

We are back on the train, saying good bye to the City with Broad Shoulders (according to a poem by Carl Sandburg).

We had another fantastic day, with a five-mile walk on the shore of Lake Michigan and a great lunch with Meridyth and Matt.

No reliable WiFi, so we'll post images of our day when a connection becomes available (maybe not until Monday upon return).

We can't even share sound pictures because this train is very quiet.  Sorry about that, Team D.  It is very restful, though.  And we've settled into our roomette just fine with some strategic repacking.

Dinner is at six.

We hope you are enjoying your Saturday!

A day in the Windy City

Brain cancer is...

...enjoying a day in the windy city.

A Movie of Our Windy City Day

So good!  Happy Friday!

Back on our train tomorrow afternoon.

(P.S...Not sure of Wi Fi on the train, but expensive iPhone charger replacement is holding strong.)

Checking Chicago off the list!

Brain cancer is...

...checking Chicago off the list!

Hi Friends.  We are here safely and loving every minute of it.


The train ride continued to be perfect.  We were really struck by the fact that many people who choose to travel by long distance train already embrace the Life 2.0 lesson that it's all about the relationships.


We met so many happy people with interesting lives.  One was a former pilot going to see her daughter who is a pianist at Julliard.  Another was a former chemistry teacher who is finding joy in every place that America has to offer.  From him we learned that the largest sandhill crane migration resting spot (0.5 million cranes) is in Nebraska. 


Crazy Tom with a K took great care of us.  His last words to Darrell as he left us on the platform were, "I am praying for you my brotha."


We learned a lot that may be applicable to our future train trips:

1. The word of the year ("lean") applies to packing for a train trip.
2. Despite #1, above, pack two iPhone chargers.  Then there will be no need to buy a cheap replacement in Albuquerque and an expensive replacement for the cheap replacement in Chicago.
3. I can spell Albuquerque.
4. Every cent, every minute is worth it.

Here's a three-minute video of the trip:

https://animoto.com/play/Jw3r1HCIYRzvoUQoN67Pbw

And here's a two-minute video of us crossing the Mississippi on one of the nation's longest single span suspension bridges:

Or try this link:  https://www.youtube.com/watch?v=cxjtHlzFbZE&feature=youtu.be




You know that both Darrell and Andi have roots in the Midwest.  Andi's family is in particular attached to the Mississippi.


We are very much looking forward to a day in the city with family.


Thanks for all your locomotive good wishes.  Hope you are surrounded with love and happiness today.

A Beautiful Train Ride

Brain cancer is...

...a beautiful train ride...

...with no pictures to prove it!

Actually we have lots of pics but we also have spotty Wi Fi, so we break with tradition and post only words today. Pics tomorrow maybe from Chicago.

It's been perfect. We love our hobbit sized room. We've met three nice sets of people (one set per meal) in tbe dining car, and the scenery is ever changing. We should be singing This Land is Your Land.

Three little word pictures to replace images:

1.  Our conductor Crazy Tom with a K came and sat in our room and said to Darrell, "You okay Man? I have never seen a guy with money taped to his head."

2.  In the observation car, Nancy from Missouri said to a new friend, "I killed 12 snakes that day."

3. Also in that car, Nanette was heard to say, "Truck driving is an important skill. I think I'll learn."

Thanks for enjoying it with us.

Signing off from the New Mexico/Colorado border.

Hugs.

Lesson #90

Brain cancer is...

...following lesson #90:  Travel Now.

The above Travel To-Do List is a spread from one of my journals, dated February 2013.  We wrote it on the train to Carlsbad.  We love the train.  Here's a close-up of the relevant item on the list:

It's today, Friends!

We're hopping on the Southwest Chief this evening, arriving in Chicago Thursday afternoon.  We'll have some fun with Meridyth and Matt before hopping back on and heading home. 

We have our own (tiny) private bedroom.  That's lesson #98 (Go big).

If blogging conditions are unfavorable, you might not hear from us for a bit.

We are very excited! We plan on sitting in the observation car and just watching the grandeur roll by.  Here's our route:

Think happy thoughts of us if you hear a train whistle, wherever you are.  We'll think happy thoughts of you...wherever we are.  All aboard!

The Doctors

Brain cancer is...

...opposed by three new members of Team D:  The doctors.

Magical Device Support Specialist Amy made sure that an additional device, power supply, and three batteries made it to our house today.  Of course all WE care about is...What will Darrell name the new batteries?  Could there BE more Jameses?  No.  No more Jameses.  The new members to Team D are all doctors:

• Dr. No
• Dr. Loveless
• Dr. Park

These doctors were necessitated because Darrell is rarely pluggin.  He's a man on the go.  Now he'll never be without back up power.

Just because you know Darrell, I know you'll want to know this:  The goal is 75% treatment (power to the arrays) a day.  Amy will download Darrell's usage at the end of the month.  Based on his determination, I'm thinking he's above 90%.  Of course.

Bonus Content

 OMG.  Ridiculously Mousse cute.  You recognize, right, Donna?

Happy Monday, Team D.

Dinner of the North

Brain cancer is...

...taking the evening to eat a dinner of the North.

Today was a nice, quiet day.  It ended fittingly with a dinner from the North, in celebration of our Game of Thrones viewing party.  Summer with assistance from Zach made beef with bacon pie and onions with gravy.  She also made a delicious salad NOT of the North, but salad is a must.

They got their recipes from our terrific cookbook,  A Feast of Ice and Fire:  The Official Game of Thrones Companion Cookbook.  This book really does deserve all five stars; it's not just the groupies.

Today was the scheduled day for Darrell's array change, but we did such a good job with the Thursday change that Darrell's hanging out for another day, and we'll do the change tomorrow.

We hope you had a relaxing Sunday.  If you're into the Game of Thrones, we hope you enjoyed Jon and Sansa in the same room...first time ever.

Celebrating Date Night

Brain cancer is...

 ..celebrating Date Night.

There is much to celebrate this lovely Saturday night.  Here are some of the things we're celebrating:

1. Darrell finished his first month's worth of double chemo unscathed.  He's a warrior.  He'll do 11 more cycles, once each month, before Temozolomide is in the rear view mirror.
2. Darrell's first week with Optune went very smoothly. He keeps looking over his shoulder to find the source of that quiet whirring sound.  Thus far, it's always been the cooling fan in his backpack, not a bad guy.  
3. Andi's family medical leave from CSUF was approved for academic year 2016-2017.  We feel greatly relieved!  I have enough sick time to cover the entire year with full pay.
4. Poliovirus for recurrent GBM recently received "Breakthrough Status" from the FDA.  Read about it at the National Brain Tumor Society.  (This article does a great job of explaining what the change in FDA status means and of placing the promise within an overall context.  Fingers crossed that Darrell will never need it, but it's great news that poliovirus might be available for him in the future if necessary.)

We're thinking about you, hoping that you're mentally sending us your items for celebration to add to our list.  Hugs.

Less Work for You Today

Brain cancer is...

...less work for you today.

 After yesterday's gala 100th post celebration, you deserve a break.  Just a couple updates:

• Darrell's last day of double chemo is today.  Then it's 23 days off.  He tolerated the double dose well.
• We managed our first array change fine yesterday.  See my handiwork (and one of Darrell's new button-ups) below:

If you'd like a more orderly, numbered version of the 100 lessons from yesterday's post, click on this link:  100 lessons .  It'll take you to a Google doc with "view only" privileges.

Hellllooo Friday! Enjoy!  (Unless you're a triskaidekaphobiac that is. Then just stay safe.  It'll be over soon.)

A note about posting 101+ :  When we started this blog, I just picked a background and hit "new post."  I didn't learn the software, I didn't look back to my  gmail address to check comments (sorry Leslie!), and I didn't edit published posts for errors.  I've since seen lots of small errors (a few dates, a street name, a dosage, an attribution).  I was tempted to go back and correct so that we have an accurate copy, but we decided against it.  What we wrote (my errors) were part of the experience at the time.  We'll try post titles and better monitoring in this and future posts.  Maybe.  But I am sorry about any errors or omissions that have interfered with your blog experience.

Brain cancer is...

 ...100 lessons...learned together.

Welcome to the 100th post in this blog! Above is the picture from our very first post, it's the day before we headed down the mountain to the ER.  In celebration of 100 posts, Darrell and Andi reflect on the lessons learned thus far in the adventure we call brain cancer.  But wait!  All of Team D appreciates the Life 2.0 lesson:  Reflect. First come the lessons from Team D members, then lessons from D & A.  Thank you for all we have learned with you! 

(Note to the Members:  We did it!  Darrell was surprised and touched.  And he's ready for the next 100 posts.)

Lessons from Team D Members with Lists

(Bullets?  Not numbers?  Formatting is tough in Blogger.)

Lessons from Anonymous

• I need to be more patient with strangers, because I don't know what they're going through.
• When someone I care so much about is going through such a rough ordeal, all of life's regular daily challenges suddenly don't seem so challenging.
• It's okay to still be happy and find the joy in each day.
• I really love my brother.

Lessons from Zachary Guillaume

• Talking about it always helps.
• Consistently re-evaluate what you attach meaning to in life.
• Have hobbies are are just for you.  You’ll be a better “you” for everyone else.
• If it seems too big to handle, make many lists.
• Everyone responds to things in very different ways; be cool with it.

 Lessons from Linda Guillaume

• Love is powerful.
• Spread joy wherever you go.
• Pray for strength and pray to help others be empowered with strength.
• The meaning of life is...To help each other through it.
• Love on people, more. 

Lessons from Tiana and Alex Guillaume

• Brain cancer is learning to slow down and appreciate the people and moments in your life each day.
• Brain cancer is marveling at the limitless love and support we have received from so many wonderful people. 
  

Lessons from Alex Guillaume

• Brain cancer is all about admiring the ceaseless strength and courage of my hero.
• Brain cancer is learning to slow down and appreciate the people and moments in life each day.
• Brain cancer is marveling at the limitless love and support we have received from so many wonderful people.
• Brain cancer is bullshit.
• Brain cancer is getting to wear sweet James Bond headgear that keeps the CIA from reading your thoughts.
• Brain cancer is cherishing simple laughs and grand vacations alike.
• Brain cancer is a nightmare you can't wake up from.
• Brain cancer is a reminder that the most important aspects of life are the people who fill it.
• Brain cancer is the darkest time in our lives, but it has been made brighter by all those who have shared their light.
• Brain cancer is no match for my Dad.

Lessons from Tiana Guillaume

• Brain cancer is visiting and calling family members every chance I get.
• Brain cancer is experiencing medicine from the patient’s side.
• Brain cancer is learning everything I can about bedside manner during my gynecologic oncology and breast cancer rotations so I can emotionally support my patients and their families the best I can.
• Brain cancer is putting everything in life in perspective.
• Brain cancer is suppressing the sadness and studying every moment so that we can come home.

Lessons from Team D Members with Individual Lessons

• One thing I've learned from Team D...Don't wait for tomorrow to appreciate what you have today.  --Melanie Munns

• Brain cancer…sucks! But an opportunity for grace.  Darrell rocks grace with a quirky edge.  –Meridyth Munns

•  Brain cancer is…cataclysmic.  –Matt Heniges.

• Brain cancer is…Impersonating a childhood hero…

...With this new phase of Optune brings yet another opportunity.  Who knew growing up in Glendora driving around pulling capers like tossing TP on trees or bushes, jumping in our cars before being caught, or playing a song with our ad-hoc pep band at houses late at night all the while humming the Mission Impossible Theme song.  Now Mr. Hunky gets to look like our hero Mr. Phelps where the outcome of every mission was successful. Lite the fuse, sit back, close your eyes and imagine the possibilities …  --Curt Welshon

•  Brain cancer is the chance to rekindle loving relationships with old friends. --Gwen and Steve Rudney

•   Brain cancer is...

… an opportunity to ponder the deeper purposes of a loving God--Ginger Geftakys

• Brain cancer is…watching the Guillaumes tackle each hurdle with tenacity, courage, and grace!  --Denise Victoria

•  Brain cancer is...a time for inclusiveness.  A time to gather everyone who matters to you close together; to enjoy their company and be thankful for all the shared good times, past and present. --Beth and Geoff  Szabo

•  Brain cancer is a reason to remember . . .

houseboat trips, commemorative alphabet books, Hawaiian adventures, soccer dinners and referee sign ups, PokeMOMs, gifts of time and expertise in front of our computers, commencement chauffeuring, investment strategy discussions, Siegfried and Roy, and so much more. Great times to celebrate, with plans for many, many more. –Hallie Yopp Slowik and Ruth Yopp-Edwards

• Brain cancer is… a reminder to be kinder and more appreciative of my family.  I embrace your adventures and remind myself that I should be doing the same!  --Kristine Quinn

•  Brain cancer is...

…an invitation to contemplate eternity.  --Ginger Geftakys

D and A Lessons

• No one expects a GBM diagnosis.
• There are so many unexpected ways that the human body can go “wrong,” and it’s often unexpected when it does. 
• There are whole worlds we personally will never know for people with different ailments and afflictions.
• Virtually everyone seems to be touched by cancer.
• No one escapes pain or loss.
• Everyone’s pain is important.
• Nothing is permanent.
• If you’re going to have brain cancer, the US is a good place to have it. 
• Clinical trials are available to only a small percentage of patients, even if they are eager to participate.
• There are no magic cures. 
• The treatment of cancers like GBM is entering a really important time, given advances in our knowledge of genetics.  There’s an amazingly bright future ahead.
• If you’re a player in the GBM game, you play to win.
• Our response to cancer brought a huge range of emotions, including ones we didn’t know existed.
• We’ve learned to check our emotional states and be mindful and honest about them.
• We’ve learned that GBM has brought huge emotional swings, and that we are sometimes out of sync in our swings. (It’s a big fat baby.)
• We’ve learned not to judge or offer advice to others about their emotions.
• Dealing with something as big as brain cancer takes up so much cognitive processing power…all the time.  (Things that used to be easy are difficult.)
• It can take a while to accept for oneself what is clear to others (e.g. work).
• We’ve learned that sometimes we need to practice things that were natural before.
• Brain cancer is not the only thing going on in life.  Everyone has things going on.
• GBM has made us appreciate the past even more (not mourn the future).
• Life is simultaneous, not sequential (all the things…all at the same time).
• Someone always has it worse.
• You can’t be “cheated out of” something that wasn’t yours to begin with.
•   “Fair” doesn’t mean “It shouldn’t happen to me.”  It means “It could happen to anyone.”
• Happiness isn’t something that comes your way; it’s something you choose, or that you build.
• It’s okay to ask for help.
• Everyone needs a team.
• Having a team where members have different perspectives is helpful.
• It’s been amazing to us that, just when we’re feeling low, people step up…without even knowing they were needed.
• Praying for a miracle isn’t a plan, but we sure appreciate when we do the planning, and Team D does the miracle praying for us.
• We’ve appreciated all the kinds of spirituality that Team D members bring to his support.
• Strength really can come through adversity.
• The love in our world is apparently boundless.
• Family and friends come first.
• Relationships are everything.
• Priorities can change instantly.
• Lean into priorities.
• Get rid of the unimportant stuff.  Someone else needs it more.
• People who do their jobs well and with love are a gift to the rest of us.
• If you’re doing something that has no purpose or reward, consider stopping.
• It’s never too late for a do over.
• Hats are fun.
• Cherish every moment.
• Laugh every day.
• Gratitude is the only way to live.
• Travel now.
• Nature is incredibly healing.  We need to maximize our time there.

• Pain or a difficult situation helps us appreciate the beauty of the world many times over.
• People are connected to each other…and across time…in surprising and delightful ways.
• Make your own rules:  Create new family traditions (like Chip Offs).  Re-fashion existing holidays.
• Life is better when Darrell says yes.
• Life really is too short to drink cheap wine.
• It’s also too short to avoid pancakes.
• Go big. Upgrade.  Add a buck to the tip.
• Life is an adventure. 
• Keep making “firsts.”