In-Between-Ness

Jenny here.  Last week was a rough week.  Two days of rapid responses from ICU due to concerning vitals during the ATG pre-conditioning, with one day of myself rushing from work to get to the hospital. But Wil survived and then cruised through the chemo with just minor GI upset (well to some it would have seemed more severe, but after having much rougher side effects from chemo in the past, its all just kind of relative at this point).

I never thought nurses would decribe him as a social butterfly...but 59 days into this stay, when he feels up to it, he is quite talkative and enjoys seeing people.  There are always a few special ones you cross paths with that make these days more human, more vulnerable, more alive.  Walking miracles.

Wil cried happy tears when the one friend engrafted and discharged.  He gave mentor like advice to a young friend I've mentioned before who had transplant but is back after complications and 3 weeks in a medical induced coma  And he encouraged the new guy.  Every time we turn around we find new amazing-ness.  It could be better I suppose, meaning Wil was home, but it could always be worse.  Yet you don't find yourself caring so much about all that anyway...everyone is cheering each other on.  The constant is the will to live and soak up as much of this life, even on the unit, as possible.  I wish I could photograph for you all some the faces of others fighting their fight.  I'm inspired every day up here.  Wil doesn't count himself among the amazing, he doesn't like all this attention anyway.  But when staff and nurses are told ahead of time that they will love working with your dear hubby?  You know you are not the only one who sees the glimmer he tries to down play.

The transplant procedure went by smoothly yesterday.  This process was so much different than transplant #1.  We joked that this was old hat now.  But when you are waiting on an intervention to save your life, that's not so much true at all...and since it was not the clinical trial, it wasn't identical.  Most notable, however, was the incredible sereneness of Wil this time.  No tears, no unrest.

And so it began again with the Chaplain prayer, the multiple checks and balances of paperwork between the blood bank staff and nurses, the medication, the cream corn smell, the warm water baths of cell pouches, the idle chit chat and wait...procedure wise it felt somewhat familiar.  Happy cells into a happy home.  They say failure to graft never happens twice.  I am hopeful, but why must we tempt the universe with such talk?  I feel much more honest to say we are just plain hopeful.   I was reminded of a quote the other day that I love:  "Hope is not the conviction that something will turn out well but the certainty that someting makes sense, regardless of how it turns out."  Vaclav Havel

This is the place I am at--90% of my life doesn't make sense (yet), but I am sure it will.  Whatever happens here changes very little of how happy we are to be together.  Of course my head is buried into the carpet with prayer, my face covered in blankets of wishes each night while I am gone.  My hope lives in the knowledge of the connected-ness of all people and events, even when that crashes into my heart's desires and expectations for life to ease up on us.

Wil napped off the Benadryl and then spent a good portion of the evening digging into his dream "birthday" gift:  A lego Millennium Falcon.  He was like a kid on Christmas morning.  Pure happiness because he said he never thought he'd have one.  At the store the cashier said some little guy was pretty lucky...she has no idea!  For those that have given Target gift cards...I could have spent it on the new sheets I need before he comes home...but this slice of happy was worth not being practical.  It's good for his soul, his fine motor skills, and that chemo brain.  It was a quiet evening, and early to bed for Wil, after he was literally nodding off with lego book in his hands, so I felt ok going home...and I slept.  Something I don't often feel or do well these days.

("Birthday" fun, Day 0)

I know we have prayers and light from around the globe.  I know that even the doctors and team are praying.  There could not be more cheering and well wishes for him.  Even with it, we are exhausted.  We are blessed.  But tired.

"Are you taking care of yourself?" Ahhh, another expression based on relativity.  If by that you mean eating cold spaghettios out of the can with a diet coke for breakfast, having your phone next to your head every night and never getting to REM sleep in case you miss a call, and driving back and forth hours a day to try and keep it all together while living on limited PTO, than yes, I am taking care of myself.  To the best that I can do.  I'm actually amazed that it's going as well as that!  My wellness, or more so the ability to keep going and hold this all together is a constant struggle and concern.  For today, at least I ate breakfast, made it safely to the hospital, and hope to make it to work.  That's a win in my book, and the best I've got.  Prayers that my best is enough, for now.

Wil had a really rough night.  Not rough enough that they called and woke me up, but rough enough the older married PA had them call me right away this morning to give me a head's up he would not look so great today.   103+ fever, rapid heart rate, increased blood pressure, vomiting.  Vital checks every 30 minutes and ICU nurse on stand by if anything changed.  He has been neutropenic so long without infection.  Everyday I say a prayer of thanks for that blessing.  Every day we are beating the odds on that front.  Today we are waiting on test results to see if that is still the case or if there is infection.  Or if these symptoms are his body raging against the new cells.  Time will tell.  The good news is his EKG continues to be normal.  His temp has been down under a 100 all morning.  He has an extra machine in the room cooling his bed and extra meds.  They took cultures and chest x-rays, results still pending.  They are leaving no stone unturned, just in case.  

These are the moments that are filled with so much emotion for me.  I can see the alarm on faces and hear the uneasiness in their voices.  We are all just holding our breath today...waiting.  Everyone wants him to sail right on through...especially me!  I seem to keep finding we are a canoe instead...paddling along, making progress, but no sails to help push us along.  In the end, we just need to make it to shore one way or the other.

So much of the deep meaning of things...of what people say, do...of life in general...is most honestly experienced in an even more rare spot than the big events...in the in-between.  In the quiet, the stillness, the rest, the goings, the rate of foot steps, sighs, in what is not done or not said.  I learn so much more from the "non-moments."  Does that make sense?

My first love, before I found Wil or social work, was my oboe.  And the quiver of the reed, the sound of the horn, were always moments of pure joy to me.  These days I practice the music of feelings when I work with families.  Now that I am older I understand more what teachers, both musicians and therapists, were trying to impart in me when I was first learning--the sound generated or the words spoken are no more important than the silence and thoughtfulness that comes first...and then after...the readying of diaphram, the holding of space, the crafted silences before a challenging run or intervention...and then those moments of deep breaths after something big right before vibrations start again...those little in betweens are just as important, to the entire piece of work, as the sounds and words you hear.  The silence is felt too.

As I sat here during transplant yesterday I noticed the in-between-ness.  Day zero.  Not -1 or +1.  Zero.  Neither the end nor the beginning, yet such a huge moment all the same.  The gentle whirrs of machines, crackles and squishes of plastic bags of frozen cells being warmed, squeaks of nurse clogs, Wil's sleepy medicated stretch sighs, pen drags across signature lines of checklists, his smile over legos, and the dripping...the almost inaudible drip of cells down miles of plastic tubing directly into his chest.  Quiet hope.  These *almost* silences--between the clamor of diagnoses, treatments, adverse reactions, test results, and the eventual engraftment in a few weeks--These times, I thought to myself yesterday, these are part of life's lyric and melody too.  The important pauses in the cadence are often overlooked, yet a true foundation for the next stanza.

(Day +1 Sleepiness)

Today I am watching him sleep again.  Trying to stay steady as we wait, attempting to breathe myself and see this time for the lesson and foundation I am guaranteed, but not yet sure of...in-between transplant and all the unknowns.  Wil, along with oncology treatment, are both works of art.  Imperfect, messy, stunning, jarring, inspiring.  As integral as the in-between-ness can be, no one loves it, me included.  Please keep all involved in your thoughts.  The pause, the stillness, continues.