Silent Night

Jenny here.

It's Christmas Eve and I am ever so struck by the difference a year can make.  I have started, and restarted, a blog this month at least three times.  I would start out with something like "no big changes" only to be in the ER for over nine hours with Wil running a fever.  Then I would start out with "We've had some bumps in the road" only for things to calm down.  It just became more manageable to do short updates on Facebook that were current time rather than wating until I had an hour or two of uninterrupted silence to blog.  I apoloigize to those we love, and who keep us close at heart, who don't have Facebook.  

A little medical update:  Today marks Day +76 of this crazy ride.  Decemeber as been up and down in some respects, yet when you have gone through your roughest stuff at the beginning of the journey, it certainly feels more...I can't say less scary because I will never get used to the text message that says "temp is 100.6" and the rush of adrenaline, the 30 minutes to get home from work, the throwing anovernight  bag together "just in case."  I can't say I worry less...maybe I just worry different?  I can freak out and breathe at the same time now.  I can organize an impromtu trip to the ER in a flash without forgetting a single thing even in the throws of fatalistic thoughts about the multiple catastrophes that could happen.  I can stream together intelligible phrases of medical history on no sleep without a pause.  I know what to expect from the process even when I don't know what the issue or outcome will be for him.  I have a caregiver mode that operates right alongside the wife melt down mode.

So we had the ER trip earlier this month.  Everything was found to be OK and his oncologist attributed the spike in temp to coming off the prednisone and his body readujusting to making its own cortisone again.  He had lost his appetite, had a fever, felt tired, irritable, achey.  All possible symtoms of flu, so it was good we had it checked out, but it made for a terribly long night.  I am happy it was nothing big.

Side note:  YES! He is off prednisone as well as cell-cept which were both immunosuppressants...what does that mean?  They are less worried about GvHD.  Immunosuppressants serve a vital role in the process.  Suppress the GvHD possibility.  However, they also make it harder for his body to produce cells which keep your cell counts low.  Low cell counts often equal exhaustion and blood transfusions.  He is still at risk for infections and deathly complications from things like your normal flu.  The process is SUCH an art!  

The CMV (think mono virus) counts had gotten very high so we started last month on IV infusions at home.  The CMV copies had come down to almost undetectable so we backed off the infusions to once a day because, again, the drugs make  his WBC and neutrophil counts drop.  But backing off the IV infusuions made the CMV rise again.  He has had to have some neupogen shots to stimulate cell production, but it's worked well and his counts are on the rise again, slowly.  In the mean time, we pump him up with units of blood.  We try to stay home away from the germs.  I am the crazy co-worker who sanitizes your desk when you are not looking, spritzes essential oils towards your cube at every cough, and gives not only the eye, but a friendly reminder on hand hygiene in the bathroom when you aren't washing right.  

Sure, we have had some 11-13 hour days at clinic, sometimes weekend labs, but no hospital, no GvHD...so we feel lucky.   And the best news???  His blood is now 100% DONOR DNA!  His blood type is now B+ and his immune system is healthy donor...plugging along to produce enough, but donor.  Next big bench mark?  Day +100.  Not out of the woods, but enjoying the view and seeing a clearing.

This past week he was in a lot of pain, belly pain, body aches, nausea, dry heaves, low appetite, constipation, diarrhea...GI upsets all around.  I was a nervous nelly, always on him for vital and symptom checks, but after a long weekend, and bothering the oncall doctor a few times, we were able to get fit into clinic at 7am Monday morning.  No symptom is too small not to discuss with his team.  Again it ended up being nothing serious, and probably just a little GI virus...or (GULP) that egg sandwich he ate last week after clinic from a fast food restaurant.  IV fluids and blood...another 13 hour day at clinic...and he was looking good again, feeling better.

Side Note:  Seriously??  We have been SOOOOO careful and NOT eating out at all...one egg sandwich because we left in a rush from home on a clinic day where he had already taken insulin so he needed SOMETHING to eat...my heart dropped when they asked if he had outside food as a possible explanation for his tummy woes.  I felt terrible...at first.  Then I took a mindful minute and thought about all the other patients who risk more with no problems.  Wil wasn't upset.  He loved his "treat" and wasn't distressed about the GI disturbance now that we knew it wasn't serious.  And his doctor wasn't lecturing...just narrowing down the possibilities.  Deep breath.  I am not in control of everything and life still has to be lived, right?  We did the best we could that day.  I do the best I can, for that moment, every day.

I sat in clinic this week, watching him sleep.  I don't get to do that as often now.  He sleeps in our bed and I am either at work, caught up in something in another part of the house, or sleeping beside him. But it's not often I get hours to look at him.  For a 6'4" guy, he always look small asleep.  

As I tried to caffenate myself to stay awake, after only catching 3 hours of sleep in between work and clinic, I remembered how much adore his quiet, restful body.  How much I love keeping watch.  How grateful I am to see the rising of his middle as he breathes.  How lucky I am to sit here with him during this whole process.  How the role of wife and friend continue to evolve each day.  How alive he is while facing so much.  How strong he is in intent even when his body has been ripped of muscle tone and balance.

In the past month several people have reached out to us who either have been recently diagnosed with leukemia or have a loved one diagnosed.  I am no authority on leukemia.  My heart sinks every time I hear the diagnosis, flood of feelings beyond words.  Internally, dropping to my soul's knees in silent prayer.  I feel an automatic kinship, they are no stranger now.  I want to wrap my arms around them.  I feel humbled they would tell ME...Someone they don't really know, something so big.  I want to tell them the things I hated hearing..."Just have hope."  or "It will be OK" or "one day at a time."  It's not that those statements don't have truth.  But I know the road is long, the miles to get to place of partial acceptance of the new life encapsulated in medical procdures, devastating treatments to the body, and real terror of loss.  So those statements were benign to me--neither helpful nor unhelpful.  All I find the words to say is, "it won't always feel like today." It isn't always easier, but it will always change, it will feel different moment to moment, those first months of diagnosis are a blur.  Hold on.  You'll have just enough of what you can survive on.

A year ago Wil was in the throws of hallucinations.  He thought his bed was a rocket a ship, that he had lost his shoes forever, and that every time I left his side I had decided to leave him forever.  You could hardly understand a word he said.  He couldn't feed himself.  He couldn't walk.  At night was the worst.  He was more agitated and saying he wanted to die.  I never REALLY slept.  I held his hand and tried to orientate him to the present moment.  

During Christmas Eve day, 2013, I was "picking out" a nursing home...from the one and only option that would accept a big guy who had been labeled a problem from the last home.

And then the night would come again and I sat in his dark room alone with him, bright city lights casting shadows across his body, the only "holiday" lights for the occasion, singing Silent Night, praying he would have even just a few hours of peaceful slumber for himself.  Hours would not happen, even med induced...but there were moments of calm and sleep.  And then the upset and confusion would start all over until morning.  It felt like time was suspended when he was quiet.  I wouldn't trade those moments for anything now.  

There have been many silent nights since then, thankfully.  And afternoons.  And mornings.  And times at clinic, like this week, when I felt swept away in the moments of his stillness, his face, with soft stubble, nestled into the recliner as blood dripped for hours.  As I watched folks from all walks of life in infusion chairs, at all points in the journey, with varying obstalces..one of the gifts I have been afforded this year is being able to find peace amongst all the noise.  Focus in the middle of chaos.  Hope as the equal twin to any reality.  Unending love in the midst of mortality.  And I guess, at the heart of it all, those are the greatest things I could wish for others newer to the journey.  But these emotional shifts only happen through the course of silent nights, sleepless nights, crazy nights, snuggled nights...and every kind of night in between.  But it happens.

All month I have been dropping to my soul's knees when I hear the song Silent Night.  Whether its the HS choirs singing at the cancer center or the song popping up on the radio, yes, I am the crazy woman sobbing in the crowd at Kroger because of the Muszak version, tears streaming down my face before the first verse begins.  The most Holy nights of my life have all happened inside hospital rooms this past year and it's not lost on me how much those nights have changed me forever.  But I am so thankful for each day we are home now too.  

We are trying to enjoy each day as a whole.  Sure, there are moments where we lose sight of the present, get annoyed with each other (we are together most of the day, every day!), or wish for this phase to just be over with already.  But it doesn't take long to come back from those times.  I never respond to his "I love you" with "I love you more" because that just sounds silly now.  I love him as much as he loves me, albeit very different ways at different times.  There is no measure and so no competition.  We are more a team then ever before.  We enjoy the dull, the muted parts of every day life.  "Average" is quite amazing.

We are enjoying the holiday month by taking drives through neighborhoods with lights, sipping coffee through the Prairie Lights exhibit, and watching movies.  We decorated the house like we were having company and planned a holiday meal even though I will be working much of it.  We opened up our gifts a few weeks ago.  Life is short.  I wasn't taking any chances that we would miss being home to do that this year! 

And so, at 2am one night, after my work shift, I gave him the opportunity for a clue by opening a piece of his gift.  A package had arrived earlier that day.

Side Note:  When Wil was inpatient he had talked about things he had always wanted to do in his life. It's funny to me that we are both band geeks who have never played a single song, in our 15+ years, together!  So when he mentioned the dream to play drums a few months ago, it put me on a search to find a used set for him as a surprise.  And I did!  

I knew the package had drum books in it and I knew his used set I purchased on special on Black Friday was ready for pickup.  I also had given up the hope of total surprise, knowing that getting the drums home and set up, for a man who never leaves the house and tracks my schedule now, was impossible.  And like I thought, he took the bait and opened the box.  And was shocked.  He couldn't believe it.  I told him I knew his core strength and coordination have taken such a hit through a year of treatment and I was hoping this would be a way to regain skills and have fun.  

And for me...I picked out my own matching gift...a guitar...something this woodwind player has always wanted to learn.  My heart is full when I think about the chance to make music with the man I love for many years to come.  Something we don't have time to wait on any longer. Something we have ample time to work on now that he is home.

Merry Christmas to you all...who have stood by us through the silence, hugged us from afar, and validated me when I felt anything but whole...we are overwhelmed constantly by the memories of 2014. Quietly humbled.  Speechless.

But for us, between the drums and the guitar, cheers to fewer moments of peace and quiet in 2015 as we rock out this next year of recovery.  

*Potential band name submissions are now being accepted* :)

Much Love.  

Love

Jenny here.

I have been absent from blogging longer than is good for me and longer than I intended.  Last week I had a blog all ready to go and lost it in a technological glitch.  Although I write these in a frenzy, with no edits, and a steady stream of my consiousness, they take a lot of emotional energy to release.  But I have to think that this blog, tonight, was the one I was meant to write and share.

After the blog disappeared, as I was pasting in photos, I just couldn't write another or try to recreate the one I had already attempted.  I've spent the last few days starting, and then restarting, another entry.  I just get this heaviness in my gut, flutter of my heart, and I retreat to marathons of Hell's Kitchen or the Gilmore Girls.  Writing these reveals more to me than any other way I process things.

I take plenty of naps with my sweet one, which may be contributing to my insomnia, but I think the real deal of my sleep issues the past few days is something more along the lines of what I'm avoiding.  And I want to sleep tonight well...so here goes everything.

It's November.  2014. 

Wil is doing pretty well these days.  By well I mean, slow and steady progress.  By well I mean I no longer fear leaving him home alone so I can go to work.  His counts continue to improve with little ups and downs, but his body is growing that immune system.  He is eating like crazy, napping a lot, but still losing weight as his body works away.  By well I mean he is walking into clinic without assistance even if it takes longer and with a few rests.  He is showering himself while I hold my breath and stay just around the corner to spot him even though he says he's OK.  We talk more about the long term and I think he is more settled in the idea that it may be awhile before he drives, sees a movie in public, takes another class, or looks for employment.  He floats between extreme gratitude for just being home and frustration at all he has lost along the way and will need to regain.  His only job right now is take care of his body--eat, sleep, exercise, mental stimulation, etc.  And that will be more than enough this year.  

The other day he decided to be "of use" and unloaded the dishwasher.  It was sweet...and absolutely exhausting for him!  I get it from an outsider's perspective.  I can only imagine the havoc cancer has played in his self image, skills, and outlook.  I take it for granted because he is generally a person who has always just been happy to be alive.  Every birthday I have known him he would take the day off of work.  He wants no presents or attention.  He just wants to rest and says "I'm happy to see another year."  This isn't to say he doesn't worry or stress...but he's pretty darn stable 99% of the time.  The past week he seems to have hit an emotional low (from my perspective) since discharge, a kind of "the honeymoon is over" feeling.  He's home.  For a good portion of the next year.  He's home.  But not all together independent yet.

This past week, after two quiet weeks, we hit a small bump:  CMV virus counts were elevated (think mono).  A different antiviral med was introduced to combat this and we are hoping the numbers will come down.  So far they are still rising, but it's caught early and the meds just started a week ago.  

He is also having significant issues with his blood glucose levels.  Want to know the trigger word for Wil?  Prednisone.  Dreaded, hated, "P" word in our house.  And he's still on it after that little assumed GvHD the last week of his hospital stay.  While the high glucose numbers are the result of the meds and will eventually come down (he was never diabetic before steroids), his new found appetite is SUPER angry he can't chow down on refined carbs.  And after several months of only being able to stomach Easy Mac and Ramen noodles, the man is HANGRY (hungry angry).  We are set to see a diabetes specialist, but honestly I am not sure what good it will do.  I am not a medical professional, but I can read a meal plan and food labels...and I love to cook.  So he has been feasting on some really lovely lean protein and low starch veggies with limited whole grains.  we are doing a great job on his diet and insulin, and the numbers have been cut in half...it's unfortunate that half is still not in the normal range.

So what have I been avoiding?  

November 2014 is a stroll down memory lane of 2013.  November. The month Wil was diagnosed with ALL, the month we rushed him to an ER with neuro impairments and then 3 days later followed a medical transport vehicle, with the contents of my whole heart, to take him to UTSW BMT floor.  The month we announced to everyone that life was suddenly changed, scary, and mostly unknown.  The month he started the chemo regime that left him disabled.

In some ways, last year at this time, we felt great relief.  We finally knew what we were fighting and had a plan for kicking cancer's ass.  We finally had an oncologist we believed in.  We danced in room 815 to Paramore's "Still Into You."  We counted out the days until he'd be done with induction.  We decorated a Star Wars Christmas tree on Thanksgiving in new fleece PJ's.  We held hands, meditated, and prayed.

We were almost blissful.  Because we had no idea what was headed our way the next 11 months.

November 2014, although we are wrapped in hope these days just as often as we are wrapped up in each other's arms under the covers of a bed without rails, is somber for me.  It leads way into December, last year's darkest month...the most tenebrous month of my life.

I think somber is the right word.  Like watching an in-memoriam slideshow of actors during an awards show.  Maybe it's just me, but when I look at those who have passed on, remembering incredible movies and  shows, you think, "wow, what a loss" or "so sad."  Simultaneously however, you smile for the moments the acting took your breath away.  I think that's the place where me and November are right now. And I think it's important work in the grand scheme of this journey.   Honoring, mourning, in tandem.

The Jenny of November 2013...she's gone.  Evaporated along with the tears.  I'm ok though.  I'm in the moment these days by feeling the emotions I don't want to share with all you.  Letting them be as I come into a new me.  I'm so happy Wil is home.  Happy he is building an immune system!  I am, in some ways, working hard at building Jenny too.  So please be patient with me.  

I didn't know what to title this blog...the blog that marks our year anniversary of THE BLOG and all the other milestones I have mentioned thus far in the post.

Side note:  As a college student of the 90's, the musical Rent is still the show I have seen more times than any other musical.  I binge on CD's, meaning I will pull one out and listen to it over and over for several weeks before I have sucked every drop of nostalgia out of it!  This past week I had a hankering for Rent.  So it's all I have listened to for days.  But like so many other relived experiences lately, the meanings have shifted to sometimes deeper perspectives.  Yesterday I broke out in song and tears to half the soundtrack.  While at my core I am so tethered to joy and amazement for this year, it's not been easy.  So many turn arounds...and yet here we stand still going and progress being made.  Last year I had no idea how WE were going to pay OUR rent.  And every time, every month, we were lifted far enough from ruin to pay the bills.  Because of many of you.

I looked back over all the titles to entries.  How can I describe a year in the life of cancer?  Or disaster? Of fear?  Of hope?  Of promise?  

Only one word came to mind:  LOVE.  I think my unconcious was saving this simple word and concept for November.  2014.  The Universe conspired to carry me along again to a place of comfort.

Below are some picture collages of the year, intertwined with lyrics from the song "Seasons of Love" from the musical Rent.  Thank you for hanging in there with us for the last 525,600 minutes.

Much...LOVE.

______________________

SEASONS OF LOVE, Cast of Rent

[You KNOW you want to pull out your CD, Spotify, or YouTube Video and listen along!]

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       Five Hundred Twenty-Five Thousand Moments so Dear...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                                               How Do You Measure - Measure A Year?

"In Daylights - In Sunsets

                                        In Midnights - In Cups of Coffee...

"In Inches - In Miles

                               In Laughter - In Strife...

"In- Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                                          

                    How Do You Measure A Year In The Life?

"How About LOVE?

                                How About LOVE?

                                                               How About LOVE?

"MEASURE IN LOVE...

                                     Seasons of Love....Seasons of Love...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       Five Hundred Twenty-Five Thousand Journey's To Plan...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       How Do You Measure The Life Of a Woman Or A Man?

"In Truth That She Learned...

                                              Or The Times That He Cried...

"In The Bridges He Burned....

                                              Or The Way That She Died?

"Its Time Now -To Sing Out...

       

                                                Though The Story Never Ends...

"Let's Celebrate...

                             Remember A Year In The Life Of Friends...

"Remember the LOVE....

"Remember the LOVE....

"Remember the LOVE....

"MEASURE IN LOVE....

"OH You Got to You Got To Remember The LOVE...

"You Know That Love Is A Gift From Up Above...

                                 "Share Love...

                                   "Give Love...

                                   "Spread Love...

"Measure, Measure Your Life In...LOVE...

"Seasons Of Love...

                                   Seasons of Love...

"Measure Your Life,

                                       Measure Your Life In...LOVE."

Home

Jenny here.

It's been a few days, but I think tonight's blog post title says it as best and most simply as needed:  Home.  Wil is...home!  

After 79 days since admit, 2 stem cell transplants, a virus, assumed GvHD...after one week ago thinking he would be moved to ICU for a few days...not to mention the combined total 149 days on BMT since November 13, 2013 and 154 days at UTSW St. Paul and 22 days at a SNF...Whew!  Wil is...home.  And for good we hope!

Wil discharged Thursday.  We said our goodbyes to staff that have meant the world to us, who have held us together day after day when we were close to falling apart.  Gosh, there is no place Wil would rather be than home...there is no place I'd rather have him be...but parting from 8th floor was a sweet sorrow indeed.  It makes my heart full to see smiles and tears and to hear a few echo what we feel inside--our commitment is strong, our love is fierce, inspite of this bumpy road.  We had a great marraige all along and B.C.  But there were so many moments of circumstances crushing us into pieces...nights had I not blogged I would have lost from my memory into a sea of blackness...and their help, each one on that floor we called home for so many days...their encouragement, spirit, support, and most of all validation, has been super glue for the soul.  For many other non-medical reasons, we could have not made it to now without them.  BMT is where I was always seen and loved on;  when the outside world felt cold and out of touch, I would breathe a sigh of relief walking on to the unit, a place where I needed no explanations, had to give no updates, and could just be still.  (Those on the outside have played such a special role too, although very different.  There is just something unique about being on a locked unit full of patients, caregivers, and staff who understand the journey forwards and back...and who can nod, smile, or tear, sharing the experience without any words needed).

So it was high-fives and hugs all around as we got ready to leave.  All morning he had been so anxious, but as the time came to leave, he started to say, "I just can't believe it.  I didn't know if it would ever happen.  I'm really going home."  Disbelief.  

Wil didn't have to wait on transport...some of the staff wanted to personally take him down to the car.  As his face hit the fall breeze at the door, his fist went to the sky.  Freedom.  Neither of us cried until we drove away, waved at UTSW St. Paul, a hospital that will soon close and be torn down as the new one opens next month. How do you wrap up, wrap around the idea of a place you spent over 22 weeks of your year being done?  And soon cease to exist?  It's not the building that made the experience, it's the people, and we will look forward to visiting the unit in their new home, when Wil is walking well, feeling well, and getting on with life after cancer.  It's just a strange feeling to ride the elevator down, walk to hall, knowing, grieving, yet hoping, you will never see those walls again.

Re-entry into life is easier said then done.  Wil is still in shock.  Still weak, brain connections slow and interesting some times.  His body has been through so much.  Emotionally I am amazed at how well he has done.  Home is what he has been dreaming of for about 50 days.  Home is also strange.  Life has continued on despite his absence.  While I have not been home a lot myself, I forget I decided to change the placement of the garbage can, hang a new picture, or reorganize the dresser.  I forget that even in my limited time at home I have been there almost every day.  I have no idea what it would feel like to be away for 79 days straight or what it would feel like to suddenly be back.  My life has been interrupted, but not as much as his.

Working in mental health affords me varied perspectives from the interactions I have with clients.  I am struck by how similar some of Wil's statements and reactions are about the last few days to people who have to re-enter life after extended travel, war, or disaster.  His numbness, shock, sadness, fear, helplessness, sleeplessness, vivid dreams, and sometimes lingering scary memories from the past year are real, even with the excitment and happiness that comes with being home.  I guess it makes sense in some part, he has had his own battle and trauma, his own injuries to body, mind, and spirit.  He is resilient.  Yes, he is ready to be home.  But we are definitely in a period of readjustment at our house.  

And for me...life has continued on without him there.  Yes, I saw him nearly every day of his admission, but I had a whole life, as sad and tiring and scary as it sometimes was, outside of the hospital too.  I feel good about being able to hack it on my own.  I have wanted, every step of the way to have my partner back to help out.  It gets hard though as Wil wants to now assess my driving skills, ask about bills, question where I have been taking the cars for service, when I get to bed, if I ate dinner, etc.  And I so want him involved and caring...eventually.  It will take some time on that end too.  I would be lying if I didn't say it is hard for both us.  I am in such caregiver mode most of the day.

Yesterday in clinic we had wonderful news.  Counts were holding strong and some better than they were at discharge!  The results of the sigmoidoscopy were negative for the GI CMV (virus) and everything was normal.  The assumed GvHD was already under control from the steriods.  AND...the DNA blood work revealed that Wil is 95% donor now...no change in blood type yet, but that will be on its way!  No blood transfusions needed, no appointment until next Tuesday!  Despite rising counts, we are reminded that he has a severely compromised immune system.  No immunities anymore to anything.  Brand new and very young.  It will take time to rebuild, but it IS rebuilding!

As Wil high fived his doctor, in true Wil-ness, "think-about-everyone-else," he asked if others in the original trial had had better luck.  Yes, some had engrafted well, but there was one other local failure to graft who was too compromised and died before another transplant.  To say that puts it all in persepective?  Oh yes.  No matter where we are or have come from or how far it feels like we have to go, we know we are blessed and that Wil is my little wonder hubby.  My outlier.  We are ordinary, but oh-so terribly lucky.  As people started posting their daily "thankfulness" lists today, I knew in my heart if I took the challenge I would get very boring because each entry would just say:  "I am thankful for this day and everyone in it."

(Halloween clinic visit with the best treat ever--good news from Dr. V!)

I love him now more than ever, have I said it often enough?  Wil, my sweets, you are my home.  The GPS location of your bed doesn't determine anything but global coordinates.  But it does feel so much better to have my heart's home laying next to me in bed each night.

This year has held infinite splendor.  Life has just continued to dramatically change.  Again.  And again.  My introvert is used to someone being there for him every moment and wants me in his sight at all times.  The extrovert that I am is used to being mostly alone and deeply missing just being a plain old wife.  Now comes the transition when we combine, consolidate, and find new consensus.  This next chapter is just beginning.  Our new life.  

I have no doubt we will come out better than ever.  We somehow learned to acknowledge and celebrate the miracles every chance we have had.  What we know more than ever is that there is no time to wait on some grand finale or goal.  If we had done that we would have missed all the itty bitty brilliancy along the way--the people, the joy learned in the midst of sorrow, the greater connection to the suffering experienced by all people before, during, and after our little blip of an adventure.  I'm really proud that we haven't missed all of that even if, sometimes, the wise Universe has granted us painful do-overs to get the message.  I'm not so concerned about what tomorrow brings right now as long as it's another chance at this crazy wonderful.   

Much love.

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.