Another day.  Another night. Another day...and another night.  Yesterday and today were relatively quiet. Roger tends to be sleeping more and more.    The visiting nurse showed up Friday morning around 8:30 to change his pain medicine supply and change his port access.  Once she left, he was back asleep and slept on and off all day.

When he's awake, his appetite is decent. Though erratic.  Thursday he ate 4 Longs Donuts (if you're here in Indy, you can understand why) and an assortment of other food. Friday was another story, a couple donuts but decreasing in quantity. And today?  Well, still less. Roger's Uncle David and Aunt Barbara came for a visit complete with some yummy friend chicken and an eclair. Roger managed to stay awake on and off and had a couple bites of chicken.  He had a couple bites of French Toast this morning made by our neighbor across the street, and then this afternoon, 1/2 a hot dog, couple few bites of ice cream and half a protein drink.  All you can do is try to nudge him to eat but its up to him and up to his body.  Pain is under much better control so I can't point to the pain as the reason for him not eating much.   Maybe the pain medicine might be making him super groggy and therefore impacting his appetite.  But we really haven't changed anything.  Not upping the dose by any means.  In fact, we are reducing one of the drugs (with the doctor's approval....). We are reducing the nerve pain drug, neurotin.  It was 3 x a day, we are backing it down to 2 times a aday and then will go every other day then, every two days...etc.  Apparently you cannot just stop this drug...gotta ween off.  I had hopes with each reduction of the drug there might be an uptick of his energy and uptick of his personality.  Unfortunately, I haven't seen that yet.  Still hoping. 

Roger has had moments of silliness...those illusive Roger-moments which used to happen daily.  He has certain favorite subjects to pick on...me and my brother  Alan especially.     Alan came for a quick visit this evening and was the victim of much Roger teasing.  The teasing would come between moments of dozing off. Good laughs.  Even if at my brother's slight expense. 

We are sitting here this evening watching the Olympics.  What a great mindless thing to watch without turning into a complete tv-zombie.  He is lounging in the hospital bed with the head side turned upwards.  I've pulled his recliner next to the bed.  I just reached over to pinch his skinny butt.  I was waiting for some sort of response as I kept pinching him lightly.  Hmmmm nothing.  Then I looked down at his hand....he was kneading the air like the cats do when you pet them.  Too freaking cute.  Speaking of cats.  Here are a couple pictures of Roger snugged with Yoda in one picture (just his head peaking out from the covers) and Hemi.  The cats seem to be staying close to him.

The only feline we don't have a picture of in bed with Roger is our rather, um,  substantial cat Earl.  He's a mere 25 lbs (Roger disputes and claims he's 30 lbs).  Well when you're a mere 25 lbs its takes a whole heck of a lotta umph to get up on the bed, so instead Slim walks around our feet looking for a pet and then goes and settles on his blanket in the corner.  All the while, every time any of the cats come around for a pet, Roger reaches down to give them a faint stroke down their back. 

Cancer continues to slowly drain the strength and some of the life out of Roger.  The latest toll is his strength in his left hand.  In the middle of the night he has virtually no strength and no coordination in the left hand.  During the day it gets a bit stronger but not much.  He cannot tightly grip anything.  So, we are very strategic where we put his drinks, his food, his pills, etc.  I know its incredibly frustrating for him.  Having said that, Roger the Super Hero keeps trying...keeps fighting.  He had me get a brass boat prop from storage so that he can try to build some sort of sculpture.  He has tasked my brother with coming up with another part to be incorporated into the sculpture.  I have a feeling he may have Alan help with the construction if he can't get his fingers working the way he wants.  Anyway, he continues to impress me with his fight, his strength and his perseverance.

Roger's overall balance is decent.  After he is awake, come mid morning, he can lift himself out of bed and balance beside the bed.  We don't have him walk without the assistance of someone else, just in case. 

Our routine is to slowly wind down the evening...watching TV (the zombie maker)...I get him settled into bed - fluffing and arranging pillows - raising and lowering different parts of the bed until we find the magic spot.  Then I fetch his various pills for night as well as a new beverage.  We now have a new part of the evening ritual. The nurse ordered a sucking-device-machine (little mini compressor) with a long tub and a sucking hose at the end.  In the middle of the night...wee hours....when Roger is congested and coughing fluids and goo...then he can use this machine to suck the crud out.  I get up, turn the machine on (the cats go flying different directions).  He uses the hose/straw to get the crud out of his mouth/throat.  I turn off the machine.  Reposition him, push his pain button and we both settle back in for the next few hours until he wakes again.  Last night we made it to 2:00, then again to 6:00, then again to 8:00 and then I gave up and got up. Roger kept snoozing until about 10 on and off.

With the above long post, I think I've caught you up. We're gonna keep trying to squeeze out as much life as we can each day.  I will continue to support his wishes, desires, and basically anything he wants. I'll continue to be his fierce advocate, tenaciously protecting him (poor hospice nurses and doctors...NOT).   And, I'll continue to hope for a miracle. 

Days are long.  Nights are short.  Days blur together.  And throughout this blurring od days/nights, the over riding theme is...there just isn't enough time... no matter what. 

Much love, a & r