Rapid

Jenny here.

Just a few days ago, we were taking down the Halloween decorations in room 813, the house was getting a full on sanitizing session, and Wil was excited to think about sleeping in his own bed, feel the breeze on his face, and see home, a place he has not laid eyes on in 76 days.  But much like a lot of our last year, and life quite honestly, plans can change--rapidly.

I sometimes envision us, and this is funny because Wil can't swim and HATES water in his face, on a whitewater rafting trip.  There are moments of such calm after being mercilessly jostled.  Clarity, serene views.  When Wil's counts finally showed engraftment last week, I felt like we were in a very beat up, wet raft, but we had made it down the rapids, tired from paddling, but alive.  Exhilaration!  Paddles dangling on the edge of the boat, no longer needed.  A smooth, slow ripple coaxing us along, ready to bank, set up our camp (at home)...and just rest and dry out.  But just as quickly as that warm, deep sigh moment presented itself, another big drop, water spray in the face, heart dropping moment, was on its way.

On Friday I arrived at UTSW, planning to bring him home.  He had some elevated kidney numbers due to dehydration, and had been instructed to drink more water to improve it before discharge.  In that short window of time that afternoon, my smiling, excited guy, spiked a low grade fever.  We were told, as long as the fever could stay down overnight, he could still discharge early Saturday morning.  

But even in the best laid out plans, even with skilled guides in what seems to be known waters, a rock can present itself in your path, requiring you to push against the current.

Saturday morning soon turned into afternoon with up and down temps.  I left around lunch to go let out the pups, do some laundry (many loads this week with that terrible BK bladder virus trying to work its way out of his body in not-so-pleasant, uncontrollable, urgent ways), and grab some food.  I had every intention of getting to work that night, but something told me I better just make my way back to the hospital and stay with him instead.  

By the time I stepped on to the unit, I was quickly updated by his nurse.  Temp had spiked.  Heart rate and respiration were sky high (heart rate was as high as 150's and respiration was shallow and rapid at 40-50).  His MEWS score (rating based on basic vitals) was a 7.  Lucky score 7 gets you a ticket on the transfer transport to ICU.  The ICU Rapid Response nurses were already on the floor monitoring.  The only saving grace was his stellar blood pressure and looking mostly OK.  As we all listened to him breathe like he just sprinted the last mile of a marathon, he said he felt OK.  

For the next few hours they pumped him up with fluids to try and slow the excelerated vitals, tylenol and cold packs for the fever.  We have become familiar with the backpack nurses of ICU.  They are all so nice too, but I was just as happy and content not knowing who they were!  We have had a few scares during this stay.  Saturday was the first time I really thought he might end up being moved to their unit.  

The fever was up and down, but his MEWS score came down to a 6 a few hours later, just enough to keep him on the BMT unit.  It was a long, mostly interrupted sleep night, with frequent vital checks and the sound of Wil's shallow, breathy snoozes.  

For several hours I just watched him sleep, like so many hours this year.  It's moments like these that take MY breath away.  That make MY heart race.  My sweet guy, so medicated he has to be on fall risk, every movement a challenge, GI upsets, bathroom accidents...My private guy who would rather shower at home with the door shut...now needing to use a bedside comode and urinal, needing support to not topple over while he struggles to relieve himself every 20-30 minutes, breathing hard, breaking a sweat from standing, pure exhaustion at just doing the things we all take for granted.  It reminded me of his first few weeks home from the SNF, up several times a night changing the bed, washing him down, and dressing him each time...oh the laundry and floor scrubbing in the middle of the night!  Wil has been so independent as of late...fall risk is a trigger for him...but the changing of the sock colors to yellow, the bed alarm, the assisted showers...I know this is temporary and not January 2014...but it felt so raw for me Saturday night.  It triggers me too.  Triggers grief, the reality of all of this that I push away to push through.  In the wee hours of Sunday morning, still awake, I sat in the dark, thinking...heart heavy about the year anniversary of my grandfather's death that had just passed, remembering how we weren't able to attend his funeral so Wil could have biopsy 3...the one that would start this whole whitewater adventure.  I expected that as we apprached November there might be a flood of water in the raft to scoop out, this weekend just opened it up a little early.

I am ever so thankful for staff here...our life jackets...I used to chip in more and help out with tasks, back during our first stay in November 2013.  Now I realize the work I have waiting for me at home when it's just me...on a 24/7 shift...no nurse, no tech, no housekeeping, no food service...just little old me to take vitals, adminster meds, change the sheets, help him shower, cook the food, and sanitize every day.  And then try to work to pay bills!  Added to my charming disposition needed to support him emotionally too.  So I have learned to let go now and let the kind professionals do it while we are here.  I have enough to focus energy towards emotionally and mentally right now in the form of just being here for Wil.  Life at home will be overwhelmingly busy when the time comes, and it will, for him to leave 8th floor.

By Sunday night he was looking improved.  Still some ups and downs with vitals, but they were better. We had stayed in our raft, even if water logged.  

This morning he cried, his voice shaking on our usual top of the morning phone call before I get ready for work or a visit to him.  And then so did I.  I had teared up in the past few days, but not really lost it.  His quiver gets me every time. He was feeling so out of control, no discharge date set right now.  He had a better night, but there are some questions, medically, we need answered and treated before he can come home.  And lately, his brain is pretty slow in grasping new information so all the plans fly over his head until it's explained a few times. His poor body and brain have been through so much this year.  

Side note:  He may hate me writing this, but for reference, for a little humor, let me give you a few examples of Wil's authentic misunderstandings due to a combo of chemo brain, fever, and sedative meds.  I had asked him on the phone what he had eaten for breakfast. He quickly replied "just my pants and undies."  I said, no, what did you eat. (annoyed voice) "Just my underwear then."  I figured out he had thought I was asking what I should bring!  He was also very inquisitive into why I was joining a basketball league and wanted to know which one.  He also has had a side effect of one of the meds where he has visual hallucinations of colors or movements.  He studied his styrofoam cup, turned it around and around.  Then stated, "I just had a beauiful mind moment."  And then the multiple attempted to act out his favorite YouTube videos, line by line with props.  These are the moments of needed laughter the drugs bless us with.  Laughing, not at him, but in spite of all this crazy.  Wil has never liked alcohol, so this is, I'm guessing what he would be like intoxicated.  Very serious.  Impeccable comedic timing.  And the faces he makes, eyes wide...in between all the other seriousness, he still makes me laugh after 15 years together.  Even without drugs. LOL.

Today the team has come to the assumed conclusion that Wil is experiencing Graph vs. Host Disease (GvHD).  His vitals scream septic, yet no infection has been noted in tests and blood work so far.  But his body is under attack, most likely from the donor cells who have figured out they are not in Kansas anymore.  They came, set up homes in his marrow, and got to work.  And then figured out they were in a foreign body and started to fight.  

GvHD can be life threatening comlication to a transplant.  Feel free to google, but know they have been preparing for this possibility all along.  Luck WAS on our side, in that he was still admitted when it started.  So, while he has a sigmoidoscopy scheduled for tomorrow to confirm it (complete with enema to look at GI track, where they think his tissues are being attacked based on the 2 days of diarrhea and wonky vitals, and take a tissue sample to analyze) they began treating him for the GvHD with steroids already today!  Covering all the bases here. Rapidly changing course as needed.

Tonight he stayed awake and hilariously alert while I wrote this blog, drugged but talkative and in his recliner for hours working on legos (although not getting far, his heart rate was around 115 while working on it and his MEWS down to 3!). He rambled on about wanting to be productive with the packing that is left, fears about the procedure tomorrow, but overall OK.  He is still on fall risk, but he ate a little tonight, after 3 days of barely any intake.

Please keep him in your thoughts and prayers tomorrow, Tuesday.  His platelets are still low, so he's getting pumped up with platelet transfusion already, a count goal of over 50 before the procedure.  It's not that they haven't done these procedures for folks after transplant before, but anything that could make him bleed is not ideal when having low counts is an added risk...but its needed.

We still want to be home for Halloween!  Cross your fingers...and toes...for a chance to make it to shore, safe from the tumbling, rolling waters of the past few days...we are ready for a toasty campfire built for two on a crisp fall night.  We are ready for some time to stop paddling, to lay on a dry blanket snuggled, and gaze at a starry sky, even if just figuratively.   

Much love.  

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.