Wednesday, December 24, 2014

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.