Wednesday, December 1 – What’s next?

With many questions from folks, we realized that it might be helpful to give you all another update and to lay out the plan (HOPEFULLY) for the next month or so.

Heath had his final lumbar puncture on Tuesday afternoon. It was an incredibly long day, but it went pretty well and he didn’t get sick this time! Hopefully, that was the last of any chemo/treatment going into his sweet body. So far no neutropenic fevers that send us back to the Duke ED, but there are a few more days that that could happen. We’re hopeful that we might skip that part this cycle.

The last chemo infusion on Thanksgiving night!

With the ostomy, his body is having a tough time keeping magnesium up to safe numbers, so he will have to go into the Valvano Day Hospital every other day for magnesium infusions until he has his reversal surgery later in the month. These labs/infusions usually take a couple of hours, but we decided we would rather go into the VDH instead of keeping his port accessed and doing the infusions at home. This is not fun, but we know it is the best way, so it is just what it has to be…(I feel like we have had to say this A LOT in the last few months).

The PET/CT scans are set for Tuesday, December 14. Hopefully, we’ll get results within 24 hours.

If all looks good (no signs of lymphoma) on the scans, he’ll be cleared for surgery to reverse his ostomy–to put his intestines back together–on Tuesday, December 28. We don’t know a ton of details about recovery, but we’re guessing he’ll be in-patient at least through the first few days of 2022.

Hope. How many times did I just type “hope,” “hopeful,” or “hopefully?” How many times have we prayed to find glimmers of hope? So many.

My Nana loved poetry. She used to do poetry readings for her book club and then even in the retirement community where she lived, right up to a couple of weeks before she died early in 2021 (She died of COVID complications–seriously y’all, please get your vaccines and wear your masks). One of her favorite poets, and mine, is Emily Dickinson. As we have made our way through these difficult months, grasping for hope, I have heard the words of a particular poem in my head, in my soul. Last week, I was walking near the elevators on the 5th floor of Duke, taking a deep breath as I dared to HOPE that Heath’s treatment was coming to an end. And I looked up and saw the words of the poem. Those words had been there THE WHOLE TIME, but my mind was always so busy as I rushed through that space that I hadn’t really read the words.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

–Emily Dickinson

I dare say the hope has been there–found deep in our souls, found in beautiful acts of kindness, of great medical care, in the ways Heath has endured and overcome so many hard things.  We’ll continue to hope and take deep breaths as we do a little decorating and maybe even a tiny bit of planning for re-joining the world.  This journey is still not close to being over, but we’re getting there.

Getting a tree!

Thursday, November 25 – Thanksgiving

We knew that this Thanksgiving would be a little different.  Somehow I find myself sitting in my den for a little while, with only Rosie by my side, sipping tea by the fire. Chris is hanging with Heath at the hospital.  Pat and Bob and EB are on the way back to Black Mountain, where they will have dinner with dear family friends and then EB will get see some of her Montreat buddies over the weekend.  Wilson had a sleepover at Ama and Grandpa’s with Grandma Betty, Aunt Jo and Uncle Steve–he wanted to be ready to watch the parade this morning (and maybe to get all the adult/dog attention to himself 😉). 

I will head out there in a little while for Thanksgiving dinner and then will take a delightfully packed plate of food and a mason jar of wine for Chris to enjoy when we switch off at the hospital.  And at about 10:30 p.m. tonight, the nurse will hang what we hope to be Heath’s final chemo infusion.  I might shed a few quiet tears under my warmed blanket on the tiny couch-ish thing in room 5211. Yep, a different Thanksgiving indeed.

Most likely earlier in the evening, we’ll go around the table, a tradition, and say what we’re thankful for this year.  I have no idea how to choose my answer.  As hard as this year has been, I actually feel full of gratitude for so many things. (And weary as hell, too, don’t get me wrong. but today we’ll hit the gratitude part).There is a Harvard study that found that giving thanks can make you happier. From the article:The word gratitude is derived from the Latin word gratia, which means grace, graciousness, or gratefulness (depending on the context). In some ways, gratitude encompasses all of these meanings. Gratitude is a thankful appreciation for what an individual receives, whether tangible or intangible. With gratitude, people acknowledge the goodness in their lives. In the process, people usually recognize that the source of that goodness lies at least partially outside themselves. As a result, being grateful also helps people connect to something larger than themselves as individuals — whether to other people, nature, or a higher power.

We feel so much gratitude this year for the incredible care and support that we have received–medical care, of course, but also from all of you. 

For your cards and prayers (those beautiful hand prayers from FPC!), and banners and texts and calls and emails, we give thanks.

For delicious meals and snacks and adult beverages, we give thanks.

For doggie training and walking and playdates and helping us catch our blessed puppy, we give thanks.

For our incredible family—and friends and colleagues—who help us keep all those juggling balls from falling, we give thanks.

For the Heath Cave out-fitting, iPad, video games and Xbox and things to keep him busy and comfy, we give thanks.

For incredible surprises that keep coming–visits/treats from sports teams and stars (more on that soon), incredibly generous gift cards, gifts that come anonymously, flowers on the porch, and so many things I can’t begin to list, we give thanks.

For teachers for all 3 of our kids who show so much care, we give thanks.

For world class medical care and staff who go beyond expectations, we give thanks.

For our 3 amazing kiddos and the beautiful and unique ways they approach the world, we give thanks.

For the strength, courage and spirit that Heath has found to fight and endure unimaginable hard things (and for the ways he inspires each of us), we give thanks.

For the ways the Spirit has moved in our lives, through all of this care, we truly give thanks.

We’ve tried to say thanks along the way, but we know that words don’t adequately express the gratitude we feel for all of it, all of you. Today I will say it again–Thank you.  If gratitude makes you happier, then we must be pretty darn happy, even in the midst of these tough months.

I share a video that an FPC member shared with me months ago.  It spoke to me during the hardness of the pandemic.  It speaks to me on this particular “different” Thanksgiving as well. https://www.youtube.com/watch?v=VLPP3XmYxXg

Heath’s montreat buddies sent this awesome bannner in pieces to be assembled.
A medical resident went above and beyond to get a connection to send a Washington Nationals treasure box!

Friday, November 19 – Hope is a dangerous thing

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.

Monday, November 15 – Home again

A good news update for you today that Heath is home! He left Duke at lunchtime and is really happy to be back in the Heath Cave.

It has been a busy stretch of days for the Tuttles so they are going to catch their breath, get some sleep, and share more with us when they can.

— Shelley

Friday, November 12 – It’s not the only thing

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.