Pi

Jenny here.

It's been 2 long weeks since I've had the want to blog.  Sometimes the short snippets of info via Facebook are just easier to manage than sitting down and letting go of the emotions that surround the days, the hours, the minutes, since transplant #2.  Giving out "just the facts" allows for energy preservation.  It also has allowed for less thinking and more napping.  Naps.  We have both been catching as much rest as we can the past weeks.  I've taken 2 days off from the hospital to get things done and to just cuddle with the dogs while binging on Gilmore Girls (Tyson has become Mr. Snippy with me because he's angry and tired of this hectic schedule).

Wil has had no blood products for four days now!  He will continue to have some transfusions to keep him going, but he hasn't gone this long without a transfusion in, oh, two months!  He is in more pain lately, bone deep pain throughout his body due to neupogen injections, but they say this is his bone marrow getting down to the business of making cells!  

Yes, if you haven't heard the dancing and shouting yet, Wil has officially engrafted!  Yesterday he had his first day of neutrophils (.3) and his WBC (.4) was slightly higher.  Today those numbers jumped to 1.5 and 1.6 respectively!  Now we are in the process of getting him a *hopeful* one way ticket home in the next few days, just as soon as he can get off the IV meds and continue with stable or increasing cell counts.  

I'm not saying social workers can't be good at math, but it's often a joke that most of us don't like it, can't do it, and skimmed by with as little of it during college as possible.  That's why it's particulary funny that I married someone who loves math for all it's formulas, constants, numbers, and logic.  Words that trigger a fear response in me, complete with self soothing rocking!  But I am good at simple math and can count. And 72 days straight is longer than we ever imagined.  Having him out of our house for 50% of the last 11 months...crazy.  We have somehow survived yet I can't really wrap my head around it either.  The numbers don't lie, but they sure don't tell most of the story either.  I think it will be some time, settling back into home, before some of the last few months has time to soak in.  Discharge day will be quiet because energy is low, but it will be lovely.  Goodbyes to BMT staff...I expect might feel both sad and surreal.  They have lived through this year with us in the most intimate way, all the twists and turns, and are jumping for joy now...big smiles today with the good news.  I hope they know how much good they do and how much of a difference they have made in so many ways beyond medical.  There is a BMT love song on my heart constantly.

Sunday, a sweet friend held a second haircut fundraiser for us.  I so wish Wil could experience the energy and love that comes with these functions.  There was the sea of blue FTBF shirts I dreamed of plus lots of hugs.  It was a great day.  Driving away from the event, headed to the hospital, exhausted but jazzed, I couldn't wait to share pics with Wil.  Between the t-shirt sales, hiarcuts, and jewelry sold we made our goal and then some.  $1300.  Enough to cover copays and meds through day +100.  

But Wil was very sleepy when I arrived and could barely keep his eyes open.  I scanned through pics once more as he slept, thought about the plentiful arms around us, near and far...so often we have felt on the edge of oblivion in the past 11 months, sometimes only reeled in by the charity, hope, confidence, kind notes, and affection of those fighting with us.  Indescribable.  

Being the non-mathematician, I am always surprised when math is on my mind.  So when the word Circumference kept popping into my head the last 2 days, I had to WikiHow it to get a better understanding of the visual I kept seeing in my mind.  

Soon it will be the year mark since Wil was diagnosed and first admitted.  A year...circling back around to this time in 2013, I just don't know where the time has gone.  Sitting here at the hospital, day 72 of this admit, day 142 on BMT, the curvaceous nature of this journey is also more than I can put into words.  I do try, via this blog, to capture some of it.  It often just feels like a photograph--a caught moment without full context.  So maybe, I thought, math could finally help me in a sort of theoretical way just this once.

Circumference:  "The linear distance around the edge of a closed curve or circular object." 

Pi:  "The ratio of a circle's circumference to its diameter"

For me, the circle visual I kept seeing this week was, I thought, about the coming back around...to this time last year...to coming home soon...to an emeging sense of self and being...to a new immune system...(insert the Lion King's Circle of Life instrumental track in the background).  

I do think that's part of it.  We have come the distance, skirted along this thing called cancer, something much bigger than we had bargained for, riding the edge along the way, yet still hanging on.

Each phase of this has held complications...an ever lengthening diameter drawn out, a widening circular turnabout following.  Only looking at the facts, the appearance of an enlarging, curving, road seems daunting.  Many times people ask how we are managing, with serious eyes and "I can't imagine" statements.  From the outside looking in I would say the same thing.  True, some days I'm amazed myself at how it all gets done...how Wil keeps going with daily pain and exhaustion...reading previous blogs I realize I don't recall some of the more traumatic, low energy times.  In an simple but eloquent way, what we have learned so far is summarized by this simple math formula.  The interesting thing? Circumference and diameter are only two parts of the equation here because circumference is intertwined with Pi.  It's in an intimate ratio relationship--ever evolving circumference has a constant, supportive counterpart in Pi.  When the diameter distance lengthens, extends, increases...without fail, so does the circumference.  Held together because of little old, unassuming, unchanging Pi.  

Pi, to me, is the foundation of the equation.  Just like the people who have remained constant on our journey.  Just like our faith, our happniess, our struggle.  It's the constants that allow us to hug the road along tight and quick turns.

This is where we must all reside to make it through this life--we all have an unknown distance yet to travel, but if it is enmeshed with a ceaseless framework of love that grows and expands in relation to the fight, we will always live in an abundance of wonderful.  We make it around the loops because of folks who have fixed themselves to our cause, in a multitude of surprsing ways. We help others, we grow, by doing the same.  We are all so intricately connected.  

This process is not lost on us for a single second.  I keep going for him.  He keeps going for me.  Constants.  When we are both weary, every time, someone else has stepped in with unbroken resolve to do the same for us as a whole.  Whether it be by prayers, donations, visits, well wishes...Our story continues to have no shortages--just a beautful ratio between what is and what is needed.

 

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.  

Sea Legs

Jenny here.  Timehop, the fun little app that links with your Facebook, is always such a reminder of how quickly life can change, move, grow, and sometimes not look like the life you had imagined at all.  Two years ago tonight we were on a cruise ship, sipping bubbly, headed to Isla Roatan and Belize.  We had just spent an amazing, although rainy, 3 days romping around NOLA, soaking wet, holding baby gators, eating beignets at midnight, ordering room service at a historic hotel, and taking graveyard tours through the French Quarter...doing what I am most proud of us for...making the best of it.

Today I have spent the afternoon bearing witness to the start of Wil's conditioning treatments for transplant 2.  We have an official date of the new transplant, October 9, 2014.  Donation is complete, as of tonight, cells being counted, and we are at the starting gate, day -9.

Wil is receiving his own pre-cruise cocktail of antithymocyte globulin (rabbit) or ATG.  It is an immunosuppressive antibody from, you guessed it, rabbits.  They use it in kidney transplants as well.  Today is day one of three days of ATG.  They call it "shake and bake" in terms of the most common side effects.  Chills and fever.  We've done chills and fevers plenty of times, never fun, but familiar.  I was not prepared, however, for the extent of the ATG side effects and enither was Wil. They slowly titrate a person up to avoid reactions, but ultimately, to get the correct rate of infusion, everyone ends up having the side effects and need to be brought back down.  They carefully monitor vitals every 15 minutes for this very reason.  

After a few hours of the transfusion, Wil started to shake a little.  Within about 20 minutes his heart was racing at 140 bpm.  His blood pressure dropped to 65/41 while his whole body felt like one big charlie horse.  Muscles cramping, shaking uncontrollably.  It was heart wrenching to watch.

He had been premedicated with high doses of Benadryl, since reaction is "expected" and common.  When his BP dropped they called the ICU nurse who assists on BMT, able to rush up, backpack full of fun, and hang around to help until things stabilize, should it turn more serious. We are on a locked unit afterall.  Rooms are pressurized.  It is more sterile here than any other part of the hospital.  If at all possible you don't want your no-immune-system loved one leaving this floor.  So with ICU nurse, assigned nurse, fellow, and the charge nurse, we had 60 minutes of agony, Wil physically, me emotionally.  

They stopped the ATG  for a few hours, gave him demerol, and waited.  His pressure started to come up, just in time for the vomiting to begin.  He had gotten platelets in the morning and was scheduled for blood later, but that was put on the back burner.  He had already had 3 doses of IV Benadryl.  

There is nothing I can do in those minutes aside from run for the barf bucket, grab a cool wash cloth, diffuse some oils, and rub his head.  I know, that's a good start, you may say.  I'm not sure it will ever feel like enough though.  I get it, it's all I can do.  My big and tall guy just looks so small on days like this...I just want to wrap him up and hold him, if it werent for yards of tubes, access points into his chest, and total body pain.  His body is not his own...nor is it mine these days.  Even touch is at the mercy of cancer treatment.  This is the struggle of the bystander...to find a place of peace, to ride the waves, and find a way to hold on while also letting go...when all you want to do is somehow make it better.  These are the days when you learn what holding a space for someone actually means, how presence  alone can be the miracle of connection, without the physical closeness we've had to rely on during all the other trials of our marriage.  

Side note:  I eat about every kind of food.  But I was vegan for awhile and still cook that way quite often.  People get really weird about meat and dairy, especially in Texas.  What do you cook?  Does it taste like cardboard?  What people don't understand is that vegan cooking is about the spices and seasoning.  It's about creative planning and skill.  Thinking outside the American diet box.  Not because nature does not allow for tasty food, but because most of us grew up on meat and dairy, easy additons to make something taste rich.  But there is something extraordinary about bringing to life a dish of grains, veggies, and plant protein.  It is even more a triumph when served to the meat crowd and they love it!  (I make a mean BBQ Tofu that required an open mind to what a meal could be without the usual ingredients.) These days, tied to a pole of bags, taped up, achey, afraid to kiss for fear of germs...I'm a hugger by nature and it's easy to feel bonded when you have physical closeness to your spouse on a daily basis...I will be glad when I can someday throw my arms around him and plant a wet kiss on his face.  But for now, we are learning a different kind of intimacy that only some kind of illness or distance can grant you.  For a combined days equally 5 months out of the last 10, I have fallen asleep alone at home.  Now it's a text or a phone call to wish each other sweet dreams.  I'm not complaining though.  Sure, I'd trade it all for the opportunity to hold him, fall asleep next to him, be bothered by the occasional mutual snoring, but it's a lesson in loving I won't forget, and I'm learning how to just be with him in the way he needs it now.  Quietly.  Sometimes from just across the room.  He feels best when I am here, he sleep better if I am watching him curled up under his marshmellow pile of blankets.  And so that's what I do now.  I watch over him, touch his head, hold his hand when I can.

Compazine, and an hour nap later, he was able to stomach half a package of beef ramen for dinner, the only thing other than clear Ensure he has had all day.  Shrinking every day.  After that, it was off to dreamland again.  Today is also the first day he felt too weak for a shower.  Two more days of ATG, and we are crossing fingers this afternoon was the worst...but we are told every day with ATG is a new day and to expect rough waters.  After he completes that, it's on to the chemos for 5 days, one rest day, and then the big day.  Our second chance (who am I kidding?  He is on at least miracle number 9 by now!)  

Tonight, as he was in and out of sleep, he said "I'm looking forward to transplant day."  

There are moments when we feel our sea legs taking root, balance in the midst of a rocking vessel and turbulent waters.  Stomachs weak, exhausted, but somehow still grounded to the floating floorboards.  During his last pre-transplant conditioning he was a ball of nerves and emotion.  Today the only thing shaky was his body, but not his spirit.  I think some of it has to do with his increasing resolve to live, to move through this inpatient stay, and get home.  But another piece, I think a larger piece, has to do with the increased outpouring of love in the last week, a few more visitors, and the energy that surrounds him (maybe even the rats and bats around the room that seem to draw in other patients and staff to have a look...I'm very proud of my extroverted decorating plan to get him more social interaction against his will, LOL).  You all mean so much.  A text, card, a Facebook tag, a call, a visit...THAT is the best medicine to keep him upright and moving in the face of this storm.  

Despite the day's harsh effects, and the physical weakness he feels, his spirit seems to have sea legs now.  Yes, two years ago we were in a small room with room service, friendly staff, fancy island drinks, and every intent to immerse ourselves in a peaceful week of time together.  Joy.  Bliss.  And it was.

Yet when I look at the details of life now, maybe it's not really all that different.  Small room, lovely staff, time together, peaceful state of mind...Joy.  Bliss.  He's more ready for this next transplant cruise...engrafting on the island of neutrophils...and now, maybe, so am I...just a different set of cocktails.  

I would love to see a sea of blue wash over Facebook...in the form of FTBF T-Shirts.  Yes, it also benefits and will pay for the many clinic visits we pray Wil will have the opportunity to attend as he heals...but seeing people turn their profiles to pictures of them with his special shirt?  I know that would mean more than anything to him.  So, if you feel the love, if you have the want, the means, and have been touched by Wil's journey, we are taking pre-order sales for shirts.  Two versions of the back, one with F*ck Cancer and one with a solid orange ribbon.  If you need more details, check out our Facebook fundraiser page at:  https://www.facebook.com/events/649721795141907/ or simply click our link on this blog page and email us.

Much love.

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.

Worth It

"Now I lay me down to sleep.  I pray the Lord my soul to keep.  If I should die before I wake, I pray The Lord my soul to take.  If I should live for other days, I pray The Lord to guide my ways."

I'm not sure how many times as a child I recited that prayer at bedtime with my grandmother.  Too many to count.  It was ceremonial in some ways.  A nice transition from day to bedtime.  But with a child's heart and eyes, death is not usually as much of a reality in your day to day prayers.  That part was just a few words of the poem I said by memory as I drifted into dreamland without many cares...calm and peace.  This year, closer to the reality of life's cyclical nature then I care to be, forced into the places of my mind where life with Wil could be shorter than I had hoped, pieces of me glued together more by faith then ever before...death is not something my mind and heart can completely escape on any given day.  That luxury vanished the day he admitted to UTSW and his leukemia was confirmed.

As I reread that, I hope you can see the light that lies in that darkness.  Fear is full of faith these days because knowing the house of cards could fall any which way makes me feel nervous...yet, in some capacity it also lets me know exactly what I hope for at my core and what I value.  Sometimes darkness allows you to hyperfocus on a singular light that would otherwise get missed.

As I spend another afternoon watching Wil drift into sleep, day +31 post transplant, day 39 of his inpatient round, another half dozen pictures taken on my phone of him zonked out peacefully on Benadryl, platelets dripping into his body, the words of this prayer are on my heart again.  He always looks so small in the hospital beds....when he is larger than life in my world.  That prayer...We are certainly still here, living out another day...but searching for guidance.  

In the past 18 hours, our soul's have been cracked wide open once again in this journey.  We had been waiting for test results, to see what percentage of Wil's DNA makeup was recipient vs. donor.  A few weeks ago it was 50/50.  For weeks now he has had low counts, 0 neutrophils, and a ANC that wouldn't budge above .1.  With haploid (50%) donor matches, engrafting takes longer than other transplants.  Our team has told us to breathe, the day is coming.  Any.  Day.  Now.  But as this week started to come to a close, I could see their expressions changing.  Their words remained constant--"We aren't worried yet.  It will happen."  But the careful crafting of their answers to include "we aren't there yet" when we asked what if's was clear--this was taking longer than they expected.

But we enjoyed many walks down the locked unit corridor in the past few days.  Wil and I have had the mantra...the day is coming.  We have done neutrophil dances, looked at pictures of cells, written "dream of neutrophils" on his marker board.  We have both been in fairly good spirits, trusting of this process, knowing good will come.  We have slept, both of us, a lot.  We have had peace.

Physically, other than having no immune system, not being able to sufficiently make his own blood, battling nausea, and having his first hives from transfusions, the week has been medically stable.  There have been no signs of GvHD.  No infections.  He can walk down the hall, shower himself, and chat up the staff.  Really and truly these are daily miracles and factors that can change in a moment.  We don't take them for granted for even a minute.

18 hours ago though...Wil texted me while I was at work.  "Can you talk?  So the results are in..."

My heart raced, we had been waiting for a positive increase in donor cells.  "...the percentage of donor cells dropped to 5%.  Looks like my body rejected his cells."  My heart sank.  Nearly ineveitable graft failure.  

Side note:  Only about 5% of people don't engraft.  There is no fault or blame to place anywhere.  Sometimes, it just happens.  We are now part of that sometimes for some people.  Oh Wil, my sweet, rare bird.

I ducked out into the hall, for a minute to quietly call the man who is my daily hero, my life line, and my everything.  He said, "You know how we joked I better not still be here for the season premiere of The Walking Dead?"  I knew where he was going with that statement.  

And so began another trip down "rare complication lane," complete with an open ended hospital stay.  With no immune system and almost daily blood products, he just can't come home.

The usual sounds of my work life felt deafening last night.  I kept my shit together though, focusing on making it out the door and to my car, where I knew the eventual heart break would stream out of me.  And so I drove the 30 miles home, clouded contacts stuck to my salty eyes, collapsed on the couch and gave space for the new evolving reality--the transplant didn't work.  My hubby has no immune system defense and will keep getting blood transfusions to simply keep him alive and going.  The anti-everythings (virals, bacterials, etc) will continue to pump and hopefully keep him from a fatal infection while we wait.  I don't really come to a place of questioning "why?" these days.  I do find myself in a state of wonder--wondering how this new piece, this new chapter, will play out...and wondering how I will keep it together.  It always comes together, this I know, but it's a scary jump into what appears to be a bottomless hole of unknowns.

Wil had his break during rounds today.  (I guess if you are going to get bad news, at least we got to have it from the Italian attending--middle aged, kind, thick accent, and full of food metaphors, something I can appreciate!)  I can hold it all together so elegantly at times, but the sight of my grieving husband, hunched over in tears, the weight of ridiculous guilt he carries because he somehow takes responsibility for the "failure"--it's an ugly cry moment.  His only concern?  It should be his life.  Instead, like always, it's everyone else.  He feels he has inconvienced everyone around him, and especially his donor.  His heart is larger than his chest can hold most days.  I want to tell him to focus all energy on him.  But concern about others...sigh...That is part of his DNA I don't need a blood test to prove.

The plan stands as this:  The best option is to get more donor cells to do another transplant or "boost" as they are calling it. Another day 0.  A few more days of cream corn smell.  More prayers, hopes, and wishes for life outside of room 813 at some point...and most importantly, more days together.  In the meantime--we wait.  We try to keep him healthy and active and in good spirits.

Moving pieces galore.  Depedency on relationships at every turn.  If only he had a cancer where medicine was enough to depend on, but blood cancers...it takes another person to save him.  

Mercy.  Grace.  There is reason in this chaos.  There is power in thoughtful tears and soulful prayers, and comfort in holding his hand as he cries.  And him holding mine back.  I'm certain I will enjoy every day I can squeeze out of him for as long as I can, in between a few rants and break downs I suppose.  We are strongly whole, and human, in the infinite ways our feelings converge along the way.  It just doesn't make the walk any easier.  But him?  I'd walk it everytime with this man.

A friend had recently posted a question on Facebook:  "Three things the you of today would tell the you of 20 years ago."  I would have been 16, taking classes at Rochester Community College.  A wee baby who never planned to get married earlier than 30 and wanted to travel and live all over the world.  I had planned to write an entire blog on that subject.  But as the post came back up in my feed last night, tears streamed and I sobbed.  I don't need 3.  There is only thing I would tell myself:  It will be worth it. All of it.  Success, failure, trials, leaps, falls, heartaches, missed opportunities, redefined dreams...because it all lead to him and to this crazy moment. It's been worth it, every time.

And so the adventure continues...I pray for days, but even more I pray The Lord to guide the ways of all involved.  

Night

Jenny here.  I realize I missed my Wednesday mark for the regular post.  Wil says "I think they will be OK."  For me, although that's true, it feels like a let down to myself.  Writing helps me, but also becomes something to avoid when I am not at a place of complete peace.  I'm feeling tired.  Uninspired.  Blah.  Dark.  I get teary at home, a now much cleaner version than when Wil left, but so empty.  I just can't seem to sleep in our bed this week so I've taken shelter on the couch.  Me, 2 blanket hog dogs, a fuzzy blanket that was a high school graduation gift from an aunt, and an afghan my grandma used to wrap me up in as a wee one.  It's no wonder, with lack of sound sleep and the living room sleeping arrangement, that my sciatica tried to rear its ugly little head and kept me home on Tuesday, icing and heating and stretching.  It's nice to be holed up at home...but not when your heart is in another city.  

I want to be there with him every minute.  Which is not possible or practical to real life.  I want to not be there too because I'm tired of riding the elevator to 8th floor, the highest patient floor at St. Paul, watching people enter and exit until I am usually the last visitor standing.  More than once staff and visitors alike see me push the "8" and say, "I've never been up high before."  We know most of the cleaning and cafeteria staff by now.  Even floating RN's and therapists are folks I run into and get the "you're still here" look.  Hospitality greets me as a familiar face.  I know every trick to minimizing parking fees and maximizing lunch budgets.  In some ways, this place is more like home this year than our house has been.  We have spent more time with these people than with any friends and family.  Life on 8th floor, while never something you'd request, has been a blessing.  We just both feel done.  Toasted.

Wil is having equal issues.  Every day he says "I just want to be home."  The care couldn't be better, they know him so well, medically and personality wise.  He's a trooper and everyone here says he is taking this better than most people!  So even on his rough days, attitude wise he's ahead and holding strong.  It's just been an extra emotional week with tears from him--he's just so homesick.  And worried.  And homesick.  (I forget that during his first round here, which was longer, he was delirious for most of it and the time dragged on more for those of us around him.  So while I hate this long stay, I'm in a slightly better place then I was during his first admission.  I've learned to somehow manage life a little better lately, just not so much this week.)

Last week at this time we had thought he was nearing discharge.  Counts had risen some.  Then dropped. Then they bottomed out.  His neutrophils, which would tell us that the transplanted stem cells are engrafting, continue to be at 0.0.  He had one blip up to 0.1 yesterday.  Today, back to 0.  A 0.5 would be an awesome sign of progress at this point, a 1.0 would be a ticket home.  Every 3 days or so he continues to need a blood transfusion and platelet transfusion to keep him standing.  He's still nauseated and having GI upset, although not as severe, most days.  He's lost 33lbs in 31 days.    

Today is the 10th month mark of treatment.  November 11, 2013 Wil was admitted through the ER to a med bed at another hospital to wait on a bed at UTSW.  

2 days later he admitted to BMT floor for induction.

37 days later he discharged to a SNF, not knowing if chemo would ever be an option again.

3 days later he was back in the ER at UTSW with an infection.

7 days on a general med floor, he was then discharged to a new SNF.

23 (very long) days at that SNF.

5 months, 6 rounds of inpatient chemo, with 32 more BMT days and 1 ER trip at UTSW.

And now today, +22 post transplant days, he has been here 31 days total for this admission so far.

We went through it, but I still can't believe he has had 135 days away from home in 10 months---107 days at UTSW, and 26 days at a nursing home.

And today marks 100 days on the BMT unit itself.  100.  

I document that here for Wil and me because it's easy to forget when you are lost in the current admission that we have done this before and been OK in the end.  We are tired right now, yet somehow we have always made it through.  Or we sometimes find ourselves saying "why does this feel hard?  We have been through worse!"  The cumulative effect, however, has caught up with us both.  Which is understandable, OK, and will keep changing. While we are stronger in a lot of ways, more knowledgable about blood cancer and drugs than we ever wanted to be, and a well oiled machine of a couple most days, exhaustion is a reality.  

We are trying to stay focused on each day, trying to dream of neutrophils multiplying in his body (waiting for engrafting).  Yet, at day 100 here, surrounded by our BMT family, well supported by his caring team, feeling the distant energy from those we love--even warriors get weary.   How is it, that in moments of total exhaustion, I am more in tune with the warrior inside then ever before?   I think the low energy we both feel is not a sign of trouble at day 100, day +22.  I think it's just a sign we are more experienced in battle than ever before. I wish I had different news.  I wish I could say my faith allows me to somehow fast forward into light.  I'm not new to dark days and have gotten quite adept at bathing in the shadows until the sun rises.  It always does--and without these moments of depth, would not be nearly as appreciated.   

My faith does not bring me to light, it sits with me through the darkness until light comes.

Wil's body is an outlier.  To date, it always seems to take the long and curvy road to recovery, but it has never let him down.  For now, we are in the trenches, hunkered down, and waiting out the night.  Dream with us of neutrophils--I have a feeling morning is on its way, even as it takes its sweet time.

Blood, Sweat, and Tears

Jenny here.  If you have been following FB daily updates some of this first part will be familiar but, for those only keeping up with us via blog, I will summarize some to catch you up.

The pharmacist met with us today to go over medications and precautions for post discharge.  During that hour meeting he said to think of Wil as a 14 day infant, because that is how old his immune system is today!  And I thought it was really smart.  Small simple feedings, avoid unnecessary exposure, keep on a schedule with naps, exercise, and medical care  (ugh, the meds list...and some are uber important, lots of directions and instructions.  And a lot of symptom education about GvHD).  He said he'd never choose to take a newborn to Walmart or out in the hot sun on a Saturday so neither should Wil!  But we are not out of the hospital just yet...more on that in a bit.

Within an hour of posting last week's blog, Wil started to have shakes, chills, and greater fatigue.  They had told us spiking a fever is often part of this process and a sign that new cells are trying to unlock their new homes and settle in (engraft).  The high fever didn't come that night though.  I can best describe this week as Wil feeling like he has the flu, still nauseated/vomiting, body aches, extreme fatigue, lack of appetite, etc.  Crummy feeliing.  All the time.  He says "this is just hard."  No complaints, but he's right.  It's hard to watch as well.  Every little calorie he does keep down goes to the transplant process, which leaves him no energy for daily living.  Yet he has only missed one day of walking and gym.  Even if he has to push his pole down the hall slowly and take a break, he gets up several times a day and gets it done.  I am so proud of him!  He is now down about 15lbs since he admitted, just not the way you want to lose it.

The next few days included thrush, a positive test for CMV (not active,so just being watched), had chest pain (ruled esophogitis after a clear EKG), and lots and lots of blood.  His numbers were pretty consistent most of the week and not really rising as fast as we, of course, had hoped...but all within "expected" per his team.  Not having enough (or any sometimes) of a type of blood cell really affects a person.  When you have almost no platelets, stubbing your toe is an emergency, you aren't allowed to shave your head or cut your nails, etc because any wounds or cuts won't scab and could bleed out.  When you are low on hemoglobin (a molecule in red blood cells) that carry oxygen in your body, you are short of breath constantly, even just getting up and taking a shower or brushing your teeth.  And when you have 0 neutrophils (which make up the majority of white cells, you have no fighters in your body to ward off infections of any kind and are constantly at risk).

Sidenote:  I would love to take some of this in stride and to "not stress."  I am proud of how I am doing quite honestly.  I know my anxiety does not help the situation, but minimizing as many risks as possible is just part of this journey.  It's so scary coming up on flu season.  I have, what I assme to be, a healthy and normal immune system.  Which means I can be exposed to things and not get sick, yet take home the flu, a cold, or anything else and not even know it...and infect my hubby who has no immune system AND no longer any immunities (after this is all said and done he will need all new vaccines, the old ones were wiped out before transplant).  I pray everytime I leave the house.  Everytime I go to the store.  I see germs now where I never took a second look, and try to minimize contact.  Anyone else that may come into contact with Wil (first person or through me) please take precautions too.  To those we love, wash your hands (and learn the proper way!)  Take your vitmamins, eat well, exercise, sleep, and get your flu vaccine (I know this one causes controversy, but Wil can't have a vaccine to protect him, so it may be a year to consider one yourself...I often don't either, but this year I will be!).

Over the weekend is when Wil finially caught the fever...and we are not talking disco!  He slept with icepacks, had the normal x-rays and cultures done to rule out infection, and felt his lowest.  His blood pressure was on the low side of normal, yet his pulse was 125-135 while resting.  This too they say is "normal."  He flirted with fever for a few days off and on.  His heart rate is now about 117 resting and temp is normal.

Monday we had the news we had been waiting for...his counts were rising and they had contiuned to rise until today.  Today they were all lower.  All he can think about is coming home right now.  We were set for tomorrow (Thursday), but it all hangs in the balance right now.  As a write this, he is getting his first bag of blood since the weekend.  While the team says this happens sometimes, for Wil it was hard to hear his discharge date may be delayed.  He can barely keep his eyes open, but when he does, he just looks sad.  He wants his own bed and uninterrupted sleep.  But all is not lost, if his numbers look better tomorrow he may still get clearance to come home.  Prayers and well wishes please!

For me, last week I was not yet ready for him to be home.  Hospitals are anything but germ free, but there is still so much support here for both of us that will be different once we are home.  I am happy to say I took care of myself this week and had a maid come in yesterday and a lawn service come today.  While an old house will never be perfect, she dusted and santized all flooring, bathrooms and kitchen, and wiped down doors, switches, and cupboards with natural non-toxic cleaners.  Feeling ever so weird about my first hired help, I worked on some other areas for a few hours too so we could get more done.  5 hours later the maid left, both of us having worked up a sweat.  I still have a few items on my list to do (fridge, replace A/C filter, buy a few new pillows, make a sanitizing spray, and baking soda/essential oil cleaning of the furniture).  I was tired, but had a hopeful sense of the transition home.  Even more happy with the grass getting cut early this morning!  We are in much better shape for his arrival.  

I wish I would have broke down and got the help sooner and just spent the money.  I carried with me so much guilt in reaching out.  How do you ratonalize spending money that could be spent another way?  Shouldn't I be able to do it myself? Having taken the plunge, should we get the chance to be on the other side of this cancer thing, the first thing I will offer a caregiver is this advice:  Get some hired help.  Loved ones will want to help, but scheduling will be a nightmare and everyone has lives they are maintaining.  And then I'll find and pay for some sort of service for them or take up a fund.  Over and over we have been blessed by charity and each has helped us in some important ways.  Often I have wanted to hire someone, then never been able to bring myself to use that money for anything other than a medical expense.  The past two days have changed my life and my heart on that matter.  When you are in the fight of your life, having help like an occasional maid or monthly lawn service, is not a luxury item like I once thought it to be.  I am providing, on a daily basis, a service no one else can--a wife caring for her husband while his body breaks down, is built up, put through the wringer, battles with the emotional cost to it all, and yet only requests one thing--ME.  I can hire a once a month maid and figure out bills later.  I can't get back this time with him, I can't know how long that time is, and I can't replicate myself.  

We have this one chance, every moment, every day, to make our time count.  I will be busy and I know I won't become a princess because I enjoy taking care of him and our home.  But having a few extra hours, even if just monthly, to reduce my stress load and be able to be more present with him because of it?  It brings me to my knees in tears.  The grateful, soulful kind.

And so my sanity has been restored a wee bit.  

And I slept without taking a Benadryl for the first time in a week.  And cooked an actual meal for myself.  And cuddled with the dogs.  And I had Thai food with a friend. And soaked in the clean tub and cried happy relief tears.  And it came, thanks to a couple of people who threw some cash in to get it done (whether you knew it or not!).  Our credit will not be the same for years.  That ship has sailed already (its a lie that medical bills won't go to collection if you just pay a little each month...they still can).  I just can't care more than the care load I am hauling around already.  I'm doing a damn good job.  If Wil survives, we have years to make amends with creditors.  Just one more thing we can look forward to facing together.  And if he doesn't, well, then I spent my days with him in meaningful ways and worried about the stupid grass.  Either way, I've not wasted the moments I've been granted with this man.  No regrets.