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.