We've Got Mail!

We have been in a bit of a battle with our mail carrier.  In the metropolis of Bangor, you either have a post office box or your own personal mail box is placed in groups by your neighbors so the postal system has fewer stops to make.  Our box is across the street on a post with five other mailboxes (picture is off the Internet to give the basic premise).  Kevin's routine has always been to walk over and get the mail after work.  Even now, as we drive right by, I frequently ask, "Can I let you off at the mailbox?"  Every time the answer is, "Nope."

About Wednesday of last week Kevin comes back from his mailbox stroll with no mail.  Thursday, same thing.  That seemed strange because we've been getting a lot of mail lately (thanks to our wonderful friends and family).  You can already guess, Friday, no mail.  Kevin called our neighbor and they hadn't been getting mail either.  "We're gonna find out what's going on Saturday." Well our little post office is open from 9:30 to 11:00 on Saturday so both Kevin and the neighbor did not hit that window of opportunity.  However, our neighbor did witness the mail carrier driving up to the bank of mailboxes and placing a package in the first mailbox. No mail for us, though (#4 on the bank of 6).

Monday, no mail.  Kevin calls the neighbor again.  Neighbor reminds Kevin it was Martin Luther King day.  Tuesday, no mail.  Full disclosure - prior to this incident we did get a generic red card that reminds patrons about snow removal.  It did not mention any specific problem and we usually get one every year. Plus, two of our neighbors were getting mail; their boxes are less than a foot from ours all on the same post.

Wednesday I called the post office.  The carrier said there was ice in front of our box which caused her to slide into the mailboxes.  I could pick up our mail in West Salem.  Kevin called too.  I'm trying not to imagine what was said because he was a little hot about the situation. He also left a little note in our mailbox for the carrier.  However, he did put salt out and tried chipping away at the ice without much success. The carrier called Kevin today with explanations like her arms are short and she hits the curb(?) and and and...but we got our mail today!

Here's what I wish that mail carrier knew.  Granted, 95% of what she delivers is junk mail and bills that people aren't too crazy about getting.  But that other 5% contains that thoughtful card or handwritten note that means something to someone.  Don't think of it as delivering junk. Consider that you're delivering good wishes and encouragement that people appreciate.

Wow.  That became a long rant. And it is absolutely NO excuse for me not getting my thank you cards out to those who have been so generous.

So today we were able to see Kevin's neurosurgeon, Dr. Hughes, for the first time since he was released from the hospital.  It was a pleasure visiting with him.  I wish I had tried to record him since I only scribbled about half of what he described in my notes. Unlike many visits where the doctor has to rush off to the next patient, Dr. Hughes talked with us for 30 minutes.

Dr. Hughes recapped the surgery and showed the pre- and post-surgery MRI scans.  He was very pleased that he was able to get so much of the tumor.  The goal is to get as much of the tumor as possible (at least 90%) without doing harm to the patient.  What most people don't realize is that the tumor isn't something they can just "pluck" out. With Glioblastoma, at a certain point, the tumor and the brain cells are almost indistinguishable. This forces the surgeon to go into the center of the tumor and take gradual skinny slices of the tumor until they think they've reached the outer edge.

We are so very thankful for this talented surgeon whose work allowed Kevin to still function so well.

He reminded us that with Glioblastoma, the tumor is never really gone.  Although we couldn't see it on the post-surgery MRI, it still exists within the brain.  Surgery is the first part of the treatment to buy some time.  Radiation and chemo are the other vital portions of the treatment plan.  Dr. Hughes also explained a little more about chemotherapy.  Each type of cancer has its own concoction (my word, not his) of chemo drugs to fight that specific kind of cancer.  In most cases, that chemo causes hair loss and nausea and other not-so-fun side effects.  The Temodar prescribed for Glioblastoma patients is "its own thing" (his words).  It has shown to help in the surgery/radiation/chemo treatment plan for these patients.  And, thankfully, it doesn't seem to affect patients so negatively.

Kevin also asked about a bump on his head (near the scar) that he didn't think was there before.  Dr. Hughes, while feeling Kevin's head, "Yeah, you have a bump there.  That is one of the two places where I made a burr hole to get started. Then I used a router to make the cuts in your skull.  You are feeling the metal disks to cover the hole."

OMG--Really??  And Kevin is up walking, talking and eating later that same day? Incomprehensible.

I asked Dr. Hughes if he was into woodworking since he knew how to use a router.  He said no because he might cut his hand and he needs them. He also assured Kevin that he didn't have a screw loose.

Kevin asked how radiation works.  I think he's visioning these cells burning up in his head and wondering where they go (do they vaporize?).  This is where I wish I had the recorder because I would need to hear his explanation 20 times to even make sense of it.  Someone with any medical background will probably read this and laugh because I'm so far off base.  Feel free to set me straight!

What I gathered is that radiation poisons the replication process of cells.  Dr. Hughes said it doesn't affect the neurons but does affect the support cells.  Those support cells can support tumor cells but also neurons.  So 18 to 24 months down the road, there can be cognitive changes, memory changes. We definitely weren't crazy about hearing that since Kevin already gets frustrated with his lack of ability to remember things.

Kevin also asked about driving.  He's asked every doctor.  Since Kevin did not have any seizures and was never on any seizure medication, Dr. Hughes said he can legally drive.  This makes me really nervous but thankfully Kevin is willing to compromise.  It still makes sense for us to ride into work together so we can go to treatments together after work.  Tonight, he drove himself back to work to give the diesel students a tour of the facilities (and made it home safely). I'm betting he's thrilled for that little bit of freedom.

We pretty much knew what Dr. Hughes was going to say but we decided to ask his thoughts on trial studies.  He's not a fan.  If we decide to look at trial studies, we need to closely examine how much time is involved, how invasive it is, and how demanding it will be.  He fears that the trial will interfere with the quality of time left.  We honestly don't know what to think.  There is no known cure at this time.  By not doing a trial you wonder if you did enough.  Yet, the trial is just a trial and may make things worse. No easy answers.

Dr. Hughes made us promise to come and see him before we let anyone else operate on Kevin.  He said he hates getting the letters from other surgeons saying his patient has died under their care.

At this point, we won't be seeing Dr. Hughes again unless a second resection is necessary.

We wrapped up that appointment at 3:00 and radiation was at 5:00. Luckily they let us check in early again. Kevin took a little snooze and I had some puzzle time but those amazing radiation ladies had us out of there by 4:00 so we were home by 4:45...where we both immediately crashed for a nap before supper.

Tonight we are thankful to have such quality care, to learn from our care givers, to be getting mail, and to have time for a nap.