Surrender

"Don't despair:  despair suggests you are in total control and know what is coming.  You don't--surrender to events with hope."  Alain de Botton

I have been joking this week that if I wrote a book, the subtitle might be something along the lines of, "And then the Universe laughed."  It always gets a smile, I guess mainly because for almost a week now, as nurses and doctors come back from days off, they get the news of the graft failure.  Slowly, you see the shock and sadness wash over them, looking to us for our reactions.  So I think they appreciate a reason to grin.  For weeks they have been our cheerleaders and assuring us grafting was just a day or two away.  While it is no one's fault, they feel disappointed now too.  We have had hugs and tears many times.

Without a doubt, I know Wil is loved up here in BMT land.  They want the best for him.  And for some reason word has gotten around that we, together, are something rare up there.  Not just in the medical sense, but in spirit and relationship. They have seen it all--even in ways i can't imagine.  So now they mourn the failed transplant along with us--they keep saying "this is so rare" and shake their heads.  I can only imagine their own process.  Yes, they are paid to be there.  But oncology is a different breed.  BMT even more unique.  We have long term relationships with these folks and they know more details about our life and process then most people in our life.  It's an incredibly safe feeling to have while you you are wide open vulnerable.  So a chance to give back has been such a special part of this time.  From giving essential oils to candy treats to getting Wil to wear something silly for a laugh (much to his dismay, but in agreement because he loves me)...being able to reciprocate the past week has been a gift.  

We call this blog, Fight The Big Fight.  With everything we have, every stumble, we pick ourselves up, a little more tired and bruised, but still, somehow, in one piece.  And then we get back to seeing this fight through.  Fight is an interesting word.  Many cancer patients and survivors use it, yet many also despise it, saying that if someone dies it feels like a judgement--that because we say someone "lost their battle," they didn't do enough.  Wil and I don't see it like that at all.  We see fighting as getting back up to the extent you can muster.  Emotionally, physically, mentally.  All bodies give out at some time.  Hearts break.  You think you've lost your phone and it's right in front of you (true story).  All of us are mere mortals.  We all struggle and eventually die.  There is no mystery in dying--true magic is in the moments we live up until it comes.  So whatever it is that takes you out?  It's not a personal flaw in our my minds, it's an evitable end that connects us all.  It is what drives us toward meaning in between.  We are fellow humans with imperfect mind/bodies doing the best we can all along the way.

We met with Wil's main oncologist yesterday to come up with a new game plan.  Every time we get to meet with her I feel some relief.  She is so dedicated, thorough, and passonate.  They all are, but we have to admit we are partial to a few.  She has spent the better part of the week calling all over the country and meeting with people to discuss Wil's case.  We are officially clinical trial drop-outs now, since all those fancy manipulated cells are now long gone from Wil's body and that protocol did not work in his case.  On to plan B.  A new transplant.  More donated cells from his family member and all that entails, starting today.

When I tell you team is pulling together all the most recent research and info to make a plan for him, it's really true.  Some of the research they are using had to be collected from an author's manuscript because it has not yet gone to print!  Astounding.  Wil has not been an easy case, my little outlier.  But we continue on. 

So here's the plan:  More chemo.  Yep, you heard right.  Wil's damaged cells, even with WBC at .1, that were supposed to all be cleared out by the intense chemo and radiation prior to his transplant, were somehow still strong enough to inhibit the grafting.  Talk about tenacious!  So next week Wil will start chemo again to condition his body for a second transplant.  6 days of chemo.  A new Day 0.  He will then continue with a few doses of chemo after transplant.  In between he will have a dose of ATG antibodies as well.  These steps are to ensure his few pesky damaged cells won't interfere and will step aside for the new cells to engraft and start to grow.  And then we will wait for a fever and wait for neutrophils.  We won't have the option of the fancy drug to combat GvHD if it arises, only steroids.  

It makes me smile, somewhat uncomfortably at times, when I see how the things I have feared the most keep getting blown out of the water by something more rare and intense.  Cancer--scary.  An aggressive leaukemia--terrifying.  Chemo--exhausting.  Liver injury to chemo and losing all function--disabling.  GvHD?  We don't want it...but at this point that would mean the cells engrafted and we'd have a chance at a new life.  

Every time I think I have faced my worst fear, it seems I am given the opportunity to face the next biggest.  Enough lessons already!  Silly me [insert laughter from Universe].  

We aren't ready to discuss or entertain the "what if's" of a second failure to graft.  We aren't there yet and don't have energy or mental space for it.  Our focus is the next Day 0.  

We had our crumbling a few days ago, I saw my husband doubled over in emotional turmoil, begging for his life, tears flowing, worried only about the relationships in his life he wished were different, feeling powerless, insignificant, and desperate.  Hand in hand we cried.  There are but a few instances along the way I will never forget and they all involve Wil melting.  But he keeps going somehow. We are OK.  He is OK.  We will continue to be OK.  But the breaks, the cracks to our armor, I don't think I would trade them either.  They keep us centered, grounded, real.  I can't lie to you, cancer is no picnic, and most of it unfathomable before you are in it.  It has weathered us to a valuable patina.  

Side note:  I have been binge watching American Pickers.  The Craiglist and midwestern in me loves the accents and deals.  In rare finds it's all about the story and the patina.  A piece is less valuable if it's been restored to original.  The rust, the dings...they tell a history and make the piece more beautiful--as is.

Today I took Halloween decorations to his room.  Yes, he will be inpatient for awhile, probably a month or so.  Maybe not through Halloween, but I refuse to let a day go by and not make some fun amidst the daily grind of keeping Wil going.  By decorating today I came to a place of peace with it--while I am lonely and facing insomnia at home without him...while he is lonely and homesick and longing for the breeze on his face--right now we are where we need to be, experiencing what we need to experience (although I don't know the reason yet).  Another chapter to a quite an adventure.

Fight.  So much fighting.  Yet the word on my heart these days is surrender.  The antonym to FIGHT.   By definition the word surrender means to stop resisting, to give over control, to allow something to gain influence.  We are not done fighting.  Yet, we are also at a place...of surrendering it all. A place of laughter, of light.  Of cobwebs and bats and goofy head gear.  Of cherishing a few "hall passes" to the other oncology floor for a change of scenery, even if its just to look at the side of a building.  Of ramen for breakfast.  Of afternoon naps.  Of thankfulness for each unit of blood that is keeping him going.  Of gratitude for a second yes to donated cells.  Of another go at a transplant.  Of no other complications.  Of early trick or treating for staff.  Of new found friends fighting alongside us.  Of surrendering to the goodness that surrounds us.

On my phone call to Wil last night, while driving home from work, he and I came to this conclusion:  our life together is nothing short of amazing.  It was before cancer.  It is during cancer.  And to that frame of reference--we also surrender.  Our ride in this life is simply amazing.  The only lesson we understand yet is this:  let life move and mold and take control.  We submit to the process of it all, not to cancer, but to the road behind and ahead.  And we have yet to be disappointed.