Day Zero Plus Seventeen – Stay Awake, Don’t Close Your Eyes

Shortly after I arrived in Jeff’s room this morning, we heard the distinctive sound of a chainsaw from seven floors below.  For more than three weeks now Jeff has been hoping that something would go wrong with the building mechanics that we can see below his window. He thought a burst pipe would be nice; some activity to observe.  At the purr of the chainsaw, Jeff jumped out of bed and rolled his “dance partner” (IV pole) to the wide counter at the window and leaned way over to find the origin of the sound.  At first, he could hear but not see.  After a few minutes, the landscaper moved to a planter bed further from the base of the building so that he could be seen from the 7^th floor.  How exciting!  It reminded me of two-year-old Kerry, hanging on the windowsill when he heard the trash truck.

Jeff’s blood counts were down a little bit from yesterday:  WBC .7 (same as yesterday), Hgb 9.5 (was 10), platelets 20,000 (was 23,000), ANC 350 (was 360).  Dr. Ahmedi says that a slow recovery to normal counts is not unexpected for a patient with “underlying MDS.”  He also noted that Jeff has 20% monocytes.  This was a count we have not needed to follow before.  Dr. Porter stopped by later and I asked whether the elevated monocyte count was an indicator for anything.  He thought it was “irrelevant at this time.”  I read and tried to understand what monocytes do.  It is complicated but it stands to reason that his would be whacky right now.  A layperson’s definition of monocyte can be found at this link:  http://www.medterms.com/script/main/art.asp?articlekey=4426

Dr. Porter also reminded us that he suspects Tacrolimus as the most likely cause of Jeff’s shoulder, arm and hand pain.  He qualifies this by saying “if it is drug-related.”  Jeff’s pain gave him so much trouble last night that he hardly slept at all.  Later in the day we learned the results of his Tacrolimus level.  It was high!  It would seem that Dr. Porter’s suspicion is spot on - again!  Jeff was given a lower dose.  He will continue to get IV Tacrolimus until engraftment.  Then he will begin to take it orally for a long time – but not forever, thank goodness.  PT came to drop off some arm exercises which will help him regain his strength and which may help with his pain. 

The PT experience at HUP has been very different than at Aria where the PT guru would run Jeff through his paces and, if Jeff was too weak to exercise, he would encourage Jeff to do what he could while lying in bed.  And he visited every day.  Here at HUP, not one exercise was required of Jeff.  There was only discussion about what his regimen might include.  Jeff did bike twice today and he did his leg exercises once.  The lack of sleep and pain knocked the stuffing out of him and he just didn’t feel great all day.

Jeff worked very, very hard to stay awake in the hopes that he will sleep well tonight.  When I left the room for lunch, Jeff snoozed.  I woke him with a phone call from the small courtyard below his room.  I waved up to him from a bench near the planter bed which had had the bushes removed by chainsaw this morning.

Kim visited before dinner and then she and I met Kerry for dinner.  It was going to be Kerry’s job to wake his father when he visited after dinner.  Poor Jeff couldn’t carry on a conversation he was so tired.  I hope the effort works for him tonight since two sleeping pills, oxycodone and Benadryl did not work for him last night.