Archive for category: ht

Do you remember the 1994 movie, “The Shawshank Redemption”?  Tim Robbin’s character is a banker convicted of murder, sentenced to life in prison in Shawshank State Penitentiary.  It is a story of justice and friendship and struggle in brutal and dehumanizing conditions.

In the scene below Andy Dufresne (Robbins) comes back to lunch with his friends after a stunt he pulled that involved playing music for the whole prison that got him two weeks in solitary confinement, in ‘the hole.”  He reflects on the power of music to get at matters of the heart, things the stone walls and prison guards can’t touch – something resembling hope.  Then Morgan Freeman’s character looks Andy in the eye and says, “Hope is a dangerous thing.”

Here’s the link to that great scene:  https://www.youtube.com/watch?v=XDGNsbLayJw

It has been a really good week.  We came home from the hospital on Monday and instead of going up for a nap, Heath ate lunch and hung out with us downstairs.  Playing with the dog, walking around and checking on things.  We had the privilege of a few nights in a row where no one had a meeting, so we really could take our time, eat dinner, walk the dog.  The dining room table had become a pile of mail and boxes and medical supplies, the detritus of life in the hospital, so she took some time to reclaim the space.  We got a little sleep, and had the chance to take a breath.

Tuesday I had a handful of work meetings, which felt nice, normal, even.  Advent approaches, after all.  Wednesday I took him to the clinic for labs and a magnesium infusion.  It seems like we’re going to need to be doing that every other day or so for the duration.  We got home by 1 and could eat lunch on the porch. Wednesday and Thursday were stunningly beautiful days, and we could open the windows and sit on the porch and really feel like we had our feet underneath ourselves.  Thursday Heath requested an outing (the first real non-hospital outing in some months), to the farm of our friends Donnie and Ashley and Shelley.  He wanted to go see the barn kitties he and Wilson have made friends with over the years, but he really wanted to check out the farm equipment.  Carrie took the boys and said he had wonderful energy – they hung out for a few hours, WAY longer than we expected.  He drove a golf cart around for a bit and said the picture below is from far enough away he’d allow us to post it. 😊 It was so exciting to see how well he felt.  Sure, he’s still pretty weak, and we have a ways to go, but it was a glimpse of something special.

But, as Morgan Freeman says, hope is a dangerous thing.

We are starting to feel like we can see something resembling the finish line of this particular season.  Yes, once you have had the ‘cancer’ word said in your presence, I don’t think you ever fully stop thinking about it.  We still have a pretty significant abdominal surgery ahead of us that we are soon to schedule.  Then we’ll have a long runway of building strength, trying to get him back to school, while still managing his ongoing concerns that won’t go away.  This isn’t something that will be “over.”  But, on Monday we’ll be admitted to 5200 and begin what we pray is round 6 of 6 of this chemotherapy regimen.  Then we’ll schedule scans to see where we are.  Heath is steady and strong, and his spirits truly have been remarkable.  We are starting to hope.

But immediately after the hope enters one’s mind also comes the questions.  The doubts.  What if the doctors are wrong?  What if it’s not all gone?  What if we have to start this all over again?  Getting the wrong answers to those questions becomes really difficult to think about.  So we’re wrestling with this conundrum right now, as we walk the dog and rake the leaves that KEEP falling.  We’re sitting here at the clinic right now with another magnesium infusion happening.  He did some school work with his extraordinary teacher and friend Rachel, and now we’re finalizing fantasy football decisions, and thinking about where we’ll grab lunch on the way home.  What does it mean to try and hope when you’re beginning to think you *might* make it through this part?  Or what does it mean when you’re afraid to hope because the alternative is crushing?  I suspect all of you reading this have had some experience like that in your life.  It’s tricky.

As Thanksgiving week approaches we’ll do our best to be grateful for the privilege of hoping for what might be on the other side of this.  Wherever you are, and whatever celebrating looks like for you, I pray you’ll have just a moment to smile and give thanks for the people that surround you – on the good days and on the days when it feels like it is all falling apart.  I can promise you that we’ll be giving thanks for you.

Today started with a bang, or a thud, or, more accurately, a splat. 🙃

Heath called Carrie’s phone a few minutes before 6am today (Friday).  His ostomy bag had filled and exploded all over him and the bed.  What a mess.  We jumped into gear trying to move him and clean him and the bed and change the ostomy bag and dressing.  It was chaos, but we are getting adept at handling these kinds of challenges.  In the midst of moving him we noticed his skin was pretty warm.  We had a few nice days at home, but Heath had been especially tired.  We were worried the neutropenic fevers would return and we’d have another bonus trip back to Duke, but were really hoping to avoid it.  But this morning meant we couldn’t avoid it any longer.  We took his temperature, shook our heads, and Carrie picked up the phone.  Before 7am Heath and I were in the car to see our friends in the ED.

A slightly complicating factor that we had to work through was the fact that Carrie had been planning to take Ella Brooks and Wilson on a quick overnight trip to see friends in Charlotte.  A change of pace and a little fresh air on a long weekend would be good for everyone’s soul.  Heath and I would have a quiet 24 hours and welcome them back on Saturday.  Should they still go?  What is the right choice?

While the immediate medical crisis of this cancer is the main thing on our minds, we’ve probably spent almost as much energy worrying about this season’s impact on our other children.  They love their brother and want him to be well, but it’s hard to know what to do and how to act sometimes.  Evenings when they pile in his bed to watch a game – even if just for a few minutes – bring Carrie and I so much joy.  While we can’t know what memories they will have of this time later on (and obviously very different for his 16 year old sister than his 8 year old brother), we don’t want them to feel like this was all lost time.  We know that they know that their parents are really tired and having a hard time juggling it all.  We’ve felt especially jumbled and forgotten a lot of silly things this week.  They’ll surely know how worried everyone was.  But I also hope they’ll know that we worked so hard to keep their lives going – none of this is their fault, after all.  We want to be present at their activities and support them with their friends.  Our own guilt at all we can’t do is also very much in play, we’ll readily admit.  We go back and forth and worry about that stuff a lot.  I suspect any of your who have been caregivers are familiar with negotiating these tradeoffs.  You do what you can, and try, desperately to make peace with what you can’t.

Underneath all of that is another important idea – while this cancer is horrible and the most important thing we are dealing with right now, it is not the ONLY thing.  The world goes on, and we want to participate in it as much as we can.  Grief in all of its forms has the ability to consume you, to shrink the world down so small.  And sometimes that’s okay, even necessary.  But we also know we can’t stay in that space too long.  We have children to raise and a crazy dog to walk and jobs we love and a world full of people, most of whom all have some joyful and pretty hard stuff going on in their lives, too.  We’re all in this together after all, aren’t we?

By the time you read this Heath and I will be settled in with our friends on 5200 for a few days.  Carrie and the other kids should be in Charlotte, and grandparents and neighbors and chipping in with the puppy.  My goodness, we can’t do any of this without the village.  My prayer is that they’ll not have too much traffic on that stretch of I-85, and will have a wonderful time with dear friends.  If we’ve been reminded of anything in this, its that the people in your life matter so much, and those relationships are worth every bit of energy you have for them.  People who you can offer love to, and can share the same with you.  On the good days and on the days when it feels like we’re stuck in quicksand.  So maybe that’s the point I’m rambling towards here as Heath naps beside me:  take some time for someone today.  It matters.  They matter.  And so do you.

And in the midst of that, take a moment to look up around you and receive some of that care from creation.  Our across the street neighbor has a tree that turns the most perfect gold this time of year.  When the sun hits it it glows.  We’ve got a newer maple trying to show off some red, too.