"Normal"

Brain cancer is...

...not growing!

Great news, Team D.  Today's MRI scans have already been read, and both tests came back with the finding of "normal."  We decided to read the reports once we saw that word "normal." 

Not only was there no increase in size, there appears to be slight shrinkage in the tumor cavity, from 2.7 to 2.4 cm. 

The physician who read the scans actually recommended that Darrell be scanned in another 3 months. 

Knowing Dr. Park and his cautious approach, he'll probably want a scan next month, which is fine, but it's hard not to feel optimistic about the results nonetheless.

The process of getting the scans was easier this time too.  They took Darrell in right on time, the perfusion injection was less painful than last month, and they gave him a toasty warm blanket.

We also discovered, while waiting  to pick up disks to take to UCLA, that the cafeteria carries the breakfast of champions:

The MRI reports don't address edema, apparently, so we have no news on any possible changes to the brain swelling.  We'll ask Dr. Cloughesy about that on Tuesday.

In case you want MORE good news:  Darrell also had a data download for Optune today.  He maintained his 93% treatment rate.

Please, celebrate with us.  May we suggest...a doughnut?

Muffin Top Pot Pourri

Brain cancer is...

...a pot pourri of happenings.

With me back at work for the summer, we've had a taste of Life 1.0.  Namely:  So many things happen all at once, with all deserving attention.  Welcome to the random assortment of events at the Guillaume household today!

1.  The baby--Mousse--is proceeding through infancy through childhood on an accelerated schedule, as dogs do.  He's now at that awkward stage where he has some adult teeth and some hideously small baby teeth.  Not his best look.

PS...Don't fear for my safety.  He's gentle.

2.  I feel so grateful for my family members, Zachary and Darrell today.

• Zach managed an emergency array change when Optune things went awry yesterday.  And he dealt with the insurance company today for MRI authorization.  Cool, calm, and collected.
• Darrell continues to be his even keeled, supportive self.  He's still making my lunch and getting me out the door every morning.  Then, when I come home, I see him inspect some broken thing, say, "I can fix that," and then actually fix it.  I am so very thankful for who he is.
• Darrell continues to make everyone laugh.  You recall those chocolate doughnuts?  Today he told me, "I now have a muffin top."   He followed it up with, "I have no shame" and grabbed a chocolate chip cookie.  He looks great, and he makes us laugh.

3.  Today is Alex and Tiana's second anniversary. 

A & T are an example of a partnership where, together, they are truly a force to be reckoned with.  What more could we want for our kids?  Happy Anniversary, Kids!

4.  Cancer updates:

• Darrell's next MRI is tomorrow morning, 8:00 a.m., in case you want to think calming thoughts at that time.  He'll have it done here at St. Jude, with all three tests (with contrast, without contrast, and perfusion), just like last month.
• We'll head to UCLA to see Dr. Cloughesy and have the scan read on Tuesday July 5.
• Drs. Cloughesy and Park will decide, based on potential changes to the edema, whether to continue with Temodar as the chemo agent, to drop chemo, or to move to another agent.

Thanks for reading all these detail.  It's not like you're not busy!  We appreciate it.

Better with You

Brain cancer is..

...so much less overwhelming because of you.

GBM is never far from our minds. It lurks.  Its treatment drives the rhythms of our days and nights.  

However, your constant stream of support helps us put the focus where it belongs in our lives:  On how much caring and goodness is in people and how willing they are to share it with grace, love, and humor. 

Next week will be five months since diagnosis.  That's a lot of days, and yet you just keep it coming.  Just in the last 24 hours, for example:

• David and Mitra called, just to share their love and check in.
• Denise dropped off more of Darrell's burritos.  He hides them; don't ask him to share.
• Pablo and Rosie fed us their favorite empanadas, homemade rice, and dessert.  So good!
• Dara and the Ciortans shared curry and rice.  Not going to make it through tomorrow.
• Stuart and Amanda drove down and had dinner with us. We had a great conversation and thoroughly enjoyed their company.  More awesome people.



Gotta love a good dino hat!

 

 

 

 

 

 

 

 

 

 




• Of nearly equal importance:  Stuart and Amanda are willing to give the selfie kiss a try:
  

  

  ...with dino hats.  Extra points for difficulty.

  Thanks, Team D, for steadfastly helping us keep our priorities straight. 

Looking Forward!

Brain cancer is...

...finding things to look forward to!

Thanks to the Mayfields, we've got our prized La Croix and also great Super Hero advice to tide us over to Season 7 of Game of Thrones.

And these arrived today:

They are small, hard case, matching wheelie bags.  We learned the lesson from our train trip to Chicago:  multiple small bags, wheels.  Retirement??  We're ready to ROLL!! 

Bonus Content:  Advice on Online Communities

We mostly try to not give too many Life 2.0 rules or advice...because advice is worth what you pay for it (ha!).  But this is one thing I've learned post diagnosis that has been an absolute lifeline for me, and I'm wondering if it might be useful to those of you (us) who are facing similarly serious medical issues.  Soon after Darrell's diagnosis, I joined the American Brain Tumor Association's online community.  

People in that community are so responsive, knowledgeable, and compassionate.  I learn things in minutes in the community that hours of Internet research and many trips to the doctor's office don't reveal. 

I'm writing about it today because I have a good example to share.  Darrell (okay, the whole house) is experiencing difficulty sleeping, so I posted in the community, asking for advice.  It's been less than 24 hours, and we have 4 or 5 separate promising leads.  Also, it's amazing to hear that there are people out there having the same experiences; it provides a different and helpful perspective.  (For a rare disease, I'm amazed at the size of the GBM community!)  Darrell wants to let you know that you're as anonymous as you choose to be when you post.  Thus you can maintain your Super Hero status without the mortals asking around about your awesomeness.

So that's my advice:  If you or someone you love is facing some new medical issue, check to see if there's an online community that can give the patient's and caregiver's perspective on diagnosis, treatment, and life issues.  Or just write to us.  We'll help you find it.  Retired people and their partners can do that.

You are in our thoughts. 

Game of Thrones Season Finale

Brain cancer is...

 ...done with Season 6 of Game of Thrones.

Great episode!  We finished our season's tradition of feasting with "authentic" recipes (as authentic as is possible for a fictional series, anyway) with Sister's Stew from the South and grilled peaches with a sauce of honey and thyme from King's Landing.  

The Guillaumes are now at a Sunday-evening-ritual loss.  Do we keep cooking from Game of Thrones book?  Do we take a hiatus until Season 7?  

Or how's this:  Recipes that have some combination of Darrell's recent favorite foods:

• Vanilla ice cream with chocolate syrup
• Shrimp
• Salty meat
• Chocolate doughnuts

We're officially open to ideas.  

Have a good week, okay?

Simple

Brain cancer is...

...Loving the dog.

Here's hoping your Saturday is that simple.

Retiring

Brain cancer is...

...retiring at 56.

Last month, Darrell notified his Dean that he would be retiring this summer.  When he pushed "send" on the email, he looked at me and said, "It's over." 

Darrell's vita--his record of professional achievements and contributions--is a dozen pages long.  Somehow, we people who keep vitae always think we'll add a couple more pages of contributions to our professions before hanging it all up.  Darrell's simple statement, "It's over" carried huge import for us.  That was an ending. 

But today we see a beginning.  Today Darrell applied for retirement, effective in August.  Now the real fun begins. 

Bonus Content:  Team D is on the move.

The Rudneys and Relations

Team D members, the Minnesota-based Rudney clan, sent good thoughts all the way from Chicago.  Gwen and Steve (left side of table) have been our friends for decades.  Gwen and I taught at the same middle school, got our PhDs together, ate dill pickle relish together during pregnancies, and presented our first professional paper together...in Chicago.  I learned how to be a successful, loving, working mother with Gwen.  

It's great to see Gwen and Steve's three grown children happily married and enjoying various pursuits (like producing tiny, cute new Team D members).

Dumpling Extravaganza

Brain cancer is...

Zach, Summer, and Sue, anticipating 6 orders of dumplings

 ...continuing to give us cause to eat fabulous food with great people.

Summer's extensive dumpling research led us to a great lunch with her mom, Sue, at Din Tai Fung.  Zero dumplings made it home with us. 

In case you haven't eaten there yet, dumpling making is very serious business:

NOT a medical procedure.

What with the wonderful Team D meal deliveries and these pictures of our lunches out, it looks like we're eating our way through the cancer experience, right?  Right!

Bonus Content

Team D members, the Case Clan, represent from the East Coast:  Virginia Beach. 

They could be watching Kenny Chesney on the stage, but they have their priorities right, taking selfies for Darrell instead. Thanks for the love from the other coast, Mike, Kim, and kids!

Old Lessons, New Shirts

Brain cancer is...

...needing to re-learn old lessons.

The Guillaume house never slumbers deeply, but this morning Darrell woke up after an especially restless night.  He was worried about the day's dentist appointment, his first since diagnosis.  I knew he was worried yesterday, and, as per usual, I rubbed the fuzzy, exposed part of his head in solidarity.  (He's been worried about the dentist for 32 years.) 

But this morning, when I asked what worried him most, he told me two things:

• Would they treat him despite his scary tinfoil hat?
• Would he have to disrupt his Optune treatment because of mandatory dental x-rays?

I shed a few tears because these concerns were so easy to fix.  I called the dentist, told them to get ready for the awesomeness of tinfoil hats, refused the scheduled x-rays, and asked for a chair in the exam room for me.  If I had asked that question, "What worries you most?" yesterday instead of just rubbing his fuzzy head, I could have bought him some more sleep.

So I learned that old lesson again:  I need to listen, then ask another question, and be ready to help.  A small thing on my part can be a helpful thing to my loved ones. 

All's well that ends well, though.  Our dentist, Rex, and our hygienist, Marianne, were fabulously understanding, as per usual.

Yes, Rex discovered the cool guy bald look before we did. 

The day continued to brighten as we spent the afternoon with my Mom...in our snazzy new matching Hawaiian shirts, complete with Route 66 travel motifs:

If you're going to choose a mom, choose one who has great ideas and who sews.

Old Enough to Appreciate

Brain cancer is...

...appreciating being old enough to treasure watching good kids become...

   ...great adults. 

Darrell and I were dating when our niece Charlene (Nancy and Greg's daughter)  was born.  She's an architect now, married to equally awesome Ryan Mendez.  Ryan's the lead guitarist in Yellowcard.

They drove all the way to the OC to take us out to BJ's for lunch before Ryan took off for the Warped tour.   We felt so very blessed to have the pleasure of the company of these people who, beyond being long-standing family members, are our good friends.  Thanks, Ryan and Charlene.  We love you.

Hot!

Brain cancer is...

Just to reiterate:  97 degrees at 7:08 p.m.

 ...not our most pressing concern today.

All of Southern California is just trying to stay cool today.  Not even the easygoing Mousse could get comfortable.

The laundry room is typically where he holds his office hours. But not today.

The bathroom tile was slightly cooler.

First time ever:  A & D headed to the mall to get our steps in.

Fortunately someone left us a message to enjoy while we walked:

Who doesn't?

Father's Day

Brain cancer is...

Darrell's pick for lunch:  Hungry Bear

 ...celebrating Father's Day.  

Happy Father's Day to all the fathers  and to the people who love them...past, present, and future. 

Darrell, because of your parenting, the world has two more funny...

Summer 2007

 

 

 

 

 caring, committed young men...

Spring 2016

 ...who know how to treat people.

Family Walk, Spring 2016

They could not have grown up with a better role model, loving parent, or hero than you.  Thank you for the gifts of our sons, for our daughters, and for the incredible role you play as a father.

Rituals

Brain cancer is...

 

...celebrating rituals.

"Rituals are a feature of all known human societies."  Life 2.0 includes appreciating the rituals that bind love ones to one another.  Today we had our breakfast ritual with Gordon, and we made paella (above) with LuAnn.  

Cooking or sharing food together is a ritual most families (including ours, on both sides) have enjoyed for years.

It's pretty cool that we're writing about rituals instead of GBM today.  We hope you celebrate--today or soon--one of your beloved rituals...

...even if it's a new one, like a selfie kiss. 

 

 

Friends

Brain cancer is...

...appreciating friends.

After a lovely breakfast on the patio at Casa Laguna, we headed home just in time for Andi to have a wonderful lunch with dear, dear friends. Ruth Yopp, Marsha Buckley Boyle, and Karen D'Abusco took the afternoon for a "ladies who lunch" date with me.  We enjoyed great food at Mulberry Street Ristorante and took some time for shopping in downtown Fullerton.


These are friends of longstanding.  For decades we were together in the Beginning Teacher Support and Assessment (BTSA) work of supporting first- and second-year teachers.  Marsha took the train all the way up from San Diego, Karen came from West County...and all three made time during their busy days to keep friendships alive.


Once again Darrell and I appreciate how much people care...and show it.  Thanks, Friends!


(PS:  Darrell had his salty/sweet lunch at home:  Deli roast beef, chicken soup, and his new favorites--chocolate mini doughnuts.)

Family

Brain cancer is...

...appreciating family. 

Thanks to family members Gail and Melanie, here's our current view at Laguna Beach :

Enough said?  No!  We drove in a shiny car, washed by Summer and Zachary:

And our server at Mozambique told the kitchen it was our anniversary, so we had this:

Clearly his family raised him well.


Here's to family!

Uninteresting

Brain cancer is...

...not that interesting today.

You know it's a good day when your most pressing question is:

Why were these ducks all hanging out together by the bridge?


Our notable accomplishments today included:

• Catching up on sleep.
• Enjoying Italian cookies.  (Yum!)
• Grading by the fire (before the heat wave hits).
• Watching a documentary on the Burr/Hamilton duel...twice!

Here's hoping that your hump day similarly had just the right level of excitement for you. 

Salty and Sweet

Brain cancer is...

 

...welcoming the munchies.

Today Darrell and I enjoyed breakfast together, then I left to teach, returning home for lunch together.
By 11:00 a.m. Darrell had enjoyed:

• five mini chocolate doughnuts
• one of Christine's famous brownies
• a small bowl of vanilla ice cream drowned in chocolate syrup
• a can of chicken soup

Go Darrell! 

We should have seen this coming when, last weekend, Darrell went out and picked up doughnuts for the family.  We have since learned that corticosteroids' major side effect is increased appetite...for salty and sweet in particular.  Someone got that one exactly right!

More good news:  Enchiladas from the Victorias and baked ziti from the Mayfields fit the build perfectly...for all of us.

We love Team D!

Good News!

Brain cancer is...

Nanette Fong, PA, Darrell Guillaume, SH, Tim Cloughesy, MD

...okay for today!  

In Darrell's words, "We heard no bad news today."  Thank heavens!

Briefly, the news from Dr. Cloughesy is:

• The "regular" scans show no increased contrast over time.  That's good; increased contrast would indicate increased tumor growth.
• The "regular" scans do (confirmed) show increased edema.  Dr. Cloughesy feels that the swelling could be the maintenance chemo.  Because of Darrell's unmethylated tumor (remember MGMT-negative status?), Dr. Cloughesy thinks it's likely that Darrell may quit the Temodar some time in the future...earlier than the planned one-year course.
• Darrell will have another set of scans and another UCLA appointment early July.  No more chemo (yea!) until after that visit, just to track the swelling and possible changes to it.
• Dr. Cloughesy read the perfusion scan. It's okay.  Darrell did choose to read the report before our visit with Dr. Park last week.  We were all a bit nervous because it mentioned increased vascularization near part of the tumor's edge.  Dr. Cloughesy showed us that the majority of the tumor cavity rim was "cold"  (dark, no increased blood flow), and, yes, a small part was bright ("hot," blood flow).  But in his opinion the bright part is not part of the tumor, it's part of the cortex (surrounding brain).  Let's hope time continues to support that conclusion,

So...Team D has a very good news day!  Thank you all for your prayers, thoughts, and good wishes!

More Detail (for those team members inclined toward detail)

• Darrell's sticking with 4 mg of the steroids per day.  Higher doses would be safe and give more of an effect, but trials--which may be part of our future--sometimes limit eligibility to patients who take no more than 4 mg per day.  
• Fascinating polio virus update:  Darrell would never be eligible for the Duke trial with polio virus for two reasons:  It's for tumors smaller than 2 cm, and his tumor is in the right hemisphere.  Only people with left-hemisphere tumors are eligible.  I did not know that!  Dr. Cloughesy commented on the high toxicity of that treatment (some people die).  The polio virus treatment is too toxic for a tumor where language occurs.  Fascinating!  It's a reminder that there are no "magic pills" in brain cancer treatment.
• There are trials occurring at UCLA for which Darrell might be a candidate, were he to have a recurrence.  Some are immunotherapy based.  Not all would require a second craniotomy. Some would be IV drug infusions.  But those are bridges nowhere on the horizon today.  Today is sunny and clear, with traffic-free So Cal freeways.

UCLA Ho!

Brain cancer is...

Sharing our favorite, Napa Valley Grille, with Zachary.

...ready for our UCLA appointment.

After a great wedding weekend in San Diego, we headed to Westwood for tomorrow's appointment.  We are tucked in and all set to see Dr. Cloughesy at 8:00 a.m.  

Need more array puns?  You got 'em!

From Zachary: 

• No array Jose!

From Moira:

• "Up, up, and array in my beautiful balloon."  (Thanks to the Fifth Dimension.)
• "And array we go!"  (Thanks to Jackie Gleason.)

Good ones, right?

On a more somber note, our thoughts are with the families and friends of the Orlando victims.  We are also holding in our hearts healing thoughts for friends who are recovering from medical procedures now.  All our love, all your way.

A wedding!

Brain cancer is...

...the joy of a successful wedding!

.

Celebrating New Lives

Brain cancer is...

..such a great reason to rejoice in new lives together!

(Updated on the hotel's tablet noon Saturday.)

We are in San Diego to celebrate the marriage of Beth and Geoff's son, our god son, Christopher.

 Today was the rehearsal and dinner.

It has been a wonderful day!

What is NOT wonderful is my laptop computer's internet card, apparently.

We have so many great pics and a you-won't-believe-it's-California video of the bay view from our 9th floor tower room.

Darrell is tired and is happy and has just taken his last chemo for the round.

We will try to find a workable connection tomorrow.

All the best!

Continued Care

Brain cancer is...

 

...continuing to get the Super Hero Team D treatment.

Fun Darrell Fact:  His favorite tuna sandwich in the world is at Panera.  Today we had a very pleasant tuna sandwich lunch date, a treat provided by the gift card by LD. 

Similar evidence of continued care:  We took a travel break from the awesome dinners provided by our good peeps at CSUF's Department of Elementary and Bilingual Ed.  When they recently opened an e-sign up for Guillaume dinner continuation, the list for two months of dinners was full in less than 24 hours.  Who does that?  Only Team D.  These efforts are much appreciated.

Darrell is feeling a bit of fatigue on Day 4 of maintenance chemo, but okay.  We all conclude there has been some improvement of speech with the steroids.

The array pun of the day is brought to you by Terri: 

"Where there's a will, there's array."

Too true, Terri, too true.

Arrays of Sunshine

Brain cancer is...

...sending arrays of sunshine and love.

We are appreciating a slower news day today, so Darrell wanted to share with you his latest array puns:

• Take it array! 
• Old soldiers never die; they just fade array.
• I want to run array from home and join the circus. 
• It's better to burn out than to fade array.
• Ignoring facts does not make them go array.

(He makes it look easy, I know.  He has been saving them up, to be honest.)

This spring Darrell and I made the difficult decision that I would follow through with my summer commitments to the work I love, including teaching summer school and some other great projects with teachers and kids.  It's been a rocky transition back to work, and it's not always easy.  (Whenever I hear an alarm on campus, I look for Darrell's Optune batteries.) 

However, this week reminded me why we all do what we do.  Here's CSUF's Block 23, candidates who are working on their credentials and master's degrees in a combined program:

Hearts for Darrell

I am teaching a graduate seminar in learning theory to Blocks 23 and 24.  It is impossible not to smile and feel solidly satisfied about the education of California's next generations in the hands of these teachers.  That, my friends, makes it worthwhile to go to work in the morning.

I also told these students that, although they are getting only half of me (the half that doesn't manage technical details), I think the half they are getting is better (wiser and more loving) than the whole they would have gotten last summer.

Because I am back at work, Zachary set up the UCLA appointment for Monday a.m. (8:00) and went with Darrell to pick up the MRI scans we'll bring with us.

Our hearts to yours!

Calling Out the Big Guns

Brain cancer is...

...getting a second opinion.

On our walk tonight, Dr. Park called Darrell.  He told Darrell to double the steroid dose (which was very low--only 2 mg per day), and he told Darrell that Dr. Cloughesy will be expecting our call to schedule an appointment for Monday (6/13).  

Dr. Park's rationale is that he's being very cautious and wants Dr. Cloughesy's opinion on the most recent scans, given the speech difficulties we described. 

By the way, Darrell feels like he's noticing some improvement with just two doses of the steroids.

Team D, this is one of those times when we are carefully selecting our response.  It would be easy to be frightened by this change in plan, but instead we're viewing these really positive things:

• We are glad we asked to look at the scans yesterday with Dr. Dolkar, or the marked increases in swelling may not have come into the doctors' conversation.
• We are glad that Darrell's Orange County team of physicians happened to be meeting on his case yesterday so that they could put the data bits together for a larger picture.
• We are glad that Dr. Park is cautious.
• We are glad that Dr. Cloughesy will be looking at the scans sooner rather than later.
• We are glad that the doctors are not territorial and are able to work so effectively together for Darrell's benefit, even across this geographic region.
• We are glad for another night in the Grand Suite.
• We are glad that you are at the other end of this post, sending your good wishes.

Here's the picture from the post we thought we'd be making tonight:

Today Darrell kept me company for the pleasure of getting my mammies grammed.  (Sorry...no pics of my scans.)  The pic above is the view from the waiting room.  Do you recognize the bridge?  It was a good reminder for us that all of us, from our varied vantage points, are looking at the same world while we work on preventing or detecting or treating our own cancers.

Thank you for your recent outpouring of support and love through texts, emails, and (hurrah!) more Guillaume meals to come. 

Phew!

Brain cancer is...

...holding steady.  (Phew!)

Acceptable news on the cancer front today.  To get right to the point:

• Darrell's Optune data download shows that he was online for treatment for a 93.18% daily average.  Recall that minimal compliance is 75% (18 hours per day).  Big D, the Optune Super Hero!  The data are in an Excel sheet that looks like this:

• Dr. Park and Dr. Dolkar both read the MRI scans.  The perfusion scan is a baseline because it was the first time he's had one.  He'll have it monthly.  So not much news there.

  

  Bottom row contains perfusion scan slides

• The regular MRI scans continue to show "bright spots" around the tumor cavity rim.  It's not possible to say there's discernible change from last month to this.  So no one can say, "Clear!" but similarly they did NOT say there was clear evidence of tumor progression.  We'll take it!  Phew.
• Many of you know that starting in mid May speech became more labored for Darrell.  A few different things may be at the cause:  Tumor regrowth (not yet detected in scans), necrosis (cells continuing to die, which is actually a good thing), or swelling from treatment.  The MRI images, below, show swelling around the resection site in April (left) and May (right).  Note that swelling  increased markedly in May:

Swelling is circled in blue.

•  As a result, Darrell started a very low dose of steroids today to reduce swelling.  If they have an effect, it will be fast--a matter of days.  We'll keep you posted.  
• All that's left for the big cancer day is double chemo.  A breeze!

So many of you were sending us prayers and lighting mental candles and singing songs in your hearts for Darrell today.  They all made it to him.  You make everything a little better.

Here's hoping for a slow news day tomorrow.