Actively Seeking "Open"

 (Readers Advisory:  Here comes a long 'un.)

Brain cancer is...

...working hard to live up to our Word.

On January 1 we shared our word of the year:  Open.  We commented in our 1/1/17 post that during 2016 we stumbled through life to discover the importance of openness, and we committed to actively pursue open for 2017.

So that's what we did today.  Here are two stories about open:

1.  Andi's ABTA Open Story:   We have discussed in this blog how much assistance we have received by reading the online community, American Brain Tumor Association, postings. Neither D nor A  has participated in online communities before, but we learned our lesson with ABTA.

Despite how much A has learned by reading, I posted infrequently.  I just read.  With Darrell's one-year anniversary, and with our commitment to open, we posted Darrell's great news (a one-year, non recurrence is still statistically unusual).  We thought people new to the diagnosis might benefit and hope.  True that.  Our post has 50 replies, each with people striving for their one-year anniversary.  We made friends in Missouri, Texas, and Florida as we discussed Darrell's future...and the future of the GBM friends in the community.  So...I made the mistake of checking the community this morning.  I started the day crying because I read posts like this:

"Well, the roller coaster ride continues....radiation oncologist says new area is too large for gamma or cyber knife, so an additional 12 days of targeted radiation will go along with the carboplatin/Avastin therapy. However...(there is always a caveat) another PET is being ordered on the off chance that the new area is just dead tissue, not recurrence. Wouldn't that be a wonderful surprise? And we are still in limbo about Duke. And Optune can't start until after radiation if he has to have it. So again, we wait.  Here's to all of us, patients and caregivers, who seem to always...ALWAYS be waiting."
Cyber knife. Who should know words like that?  Who should know that there's always a caveat?  Who should know that we are always waiting? Again we urge Team D members facing medical crud to join a community.  People know stuff.  People are open.

2.  Darrell's Ambassador Story:  Who knows why Darrell is beating the stats (other than he wakes up every morning saying, "Today is going to be a great day," and he has the incredible support of Team D...), but we can't let Optune escape public notice.  Today we completed an application for the Optune Buddy Program, which connects new GBM patients considering Optune as part of their treatment.  This despite Darrell is a private person who doesn't relish speaking.  So...if you happen to be diagnosed with GBM and are thinking about treatment options, Darrell might be your buddy.

I am very proud of my husband.

It is only because we chose open that when we were doing this...

...we saw this...

And in case you are open to more flowers...We walked through our neighborhood and loved this:

Happy Thursday!