Day +8 – appetite wanes

Tuesday July 24, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

This morning is a non running day so the first thing I do is get up on the roof and sweep the water off the slide toppers.  Paul suggested in yesterday’s comment, which was seconded and thirded by others, that I just bring the slides part way in and put them back out to force the water off.  I’d previously been told there were some problems with that so I went to the RV Forums to see what they had to say.  There are a LOT of opinions about this and even about the importance of slide toppers in the first place by both owners of motor homes, which usually have them and 5th wheels which may not.  Here is what I find.

When you bring your slides in that opens the seals which are only sealed when the slides are fully open or fully closed. Several people at IRV2 said that, depending on the slide topper design, they got water inside their coach by bringing them half way in. There were also comments saying, and we’ve been told by the hydraulics people, not to bring the slides part way in and then send them back out but to always bring them all the way in and send them all the way out with the engine running.

Other people on IRV2 said just dip your coach down in front or in back to make the water slide off.  I don’t think so since we understand it is important to have your coach level before putting the slides out and besides this rain business happens every day.  I don’t think I want Winnona curtseying every day.  Too much trouble for us both.

SO, when I get older and can’t get up on the roof, I’ll probably take my chances on the unsealed slides and water but for now, I actually like getting up there. It isn’t hard or scary for me and it doesn’t take long. Next time I have to do it, I’ll take a picture of the views although I don’t know that there is much to see.

After that research and my trip up top, I want to go sit outside at least long enough to eat my breakfast.  But I’m a lazy cook.  I was the chief cook from about the age of 20 until about the age of 50 or so.  In the early years I was even a gourmet cook with all sorts of exotic foreign dishes.  But now, all I want is vegan and easy.  It’s the “easy” part that’s difficult.  J  So that leaves out pancakes, too much trouble and takes too much time for these hospital days.  Tofu scramble?  Great idea but also takes more time than I want to spend.   So I just cut up  a huge bowl of fruit – a thick slice of pineapple, an apple, an orange, a nectarine and a banana.

I take my books and my fruit outside to my gravity chair and use the picnic table bench as my table.

I cut off the top of my head in the self timed picture but that’s ok since the fruit bowl is better looking anyway.  If you think you’ve seen that blue sundress before, you have.  It’s my version of the “house dress”.  I put it on nearly every day between nightgown and the long pants and T shirt I have to wear to the hospital so I don’t freeze.

 

 

 

Here’s the view from my chair this morning.  Pretty clear what sort of weather we’re going to have.

 

I hear the unmistakable squawk of the sand hill cranes and see them fly in but can’t see where they land.   So I get up and walk down to the end of the street thinking they will be at the little “wetland” there. 

 

But nope, they are out on the edge of the highway and I can’t get a clear picture through the chain link fence.  I got a couple of blurry ones but you don’t want to see them.

After a little readin’ and a little writin’ and a little eatin’, I go over to Karen and Al’s to take them our copy of “Forks Over Knives” to watch.  I hadn’t read that they’d already seen it.   While over there talking to Karen, up strut the two Sand Hill cranes who just stand there at the foot of the driveway.  Boy I could have gotten great pictures of them just standing around looking expectant.  Karen confesses to feeding them bread.  I tsk tsk tsk that they need to be wild and on their own so she waits until I leave to serve up the snack.  J

Time to get a move on.  Yesterday, I got smart enough to pack food for two days and leave it in the “family lounge” refrigerator on his floor at Moffitt so I don’t have to make lunch or dinner.  Yea!   All I have to do is get into my warmer clothing, pack up my “stuff” (books, journal, laptop, anything he wants, camera, jacket, sunglasses, keys), jam it all into my little red cart and I’m off.

When I arrive it seems that he just awakened from a morning nap.
He says the antibiotic given him for the prostatitis seems to have helped and he isn’t as sore and actually slept a full 3 hours at one point during the night.  A big thank you to PA Mark Honor for this med change. 

 

But he is still having trouble eating so after finishing his breakfast, and receiving another 1/2 hour drip of that antibiotic, he took another nap and has just awakened.

It’s a routine morning.  Same old, same old.  He brushes his teeth,  rinses with the saline rinse, shaves.  We set out for the first of the walks but Dr Perez comes for rounds after the first lap.

 

She checks his lungs and his mouth and tells him he’s right on track.

When he talks about his mouth being sore and not being as interested in eating, the nutritionist perks up and stays after to encourage meats and milkshakes.  Obviously she hasn’t heard of Vegan but then I could talk a lot about the sponsorship of nutrition education in this country.

 

 

He is still eating and his weight is steady at 136 so that is not a problem but he says  that although he still has his taste buds at least fairly well, starting yesterday he began losing his interest in his food and it now takes an hour or an hour and a half to eat his meal. He says his lack of interest is not a function of the throat problem, he’s just lost his appetite.   In fact, the throat problem gets better the more he swallows and returns if he leaves long intervals between swallowing.

His counts have not moved much other than the platelets going down.  He says he’s under impressed by the neupogen’s affects on his white blood cells.  But I remember from his earlier shots before collection that the neupogen, which was in a bigger dose than now, worked slowly while it was the mozobil they gave him that jumped the counts.   So it appears that slow and steady will win this race. 

Hemoglobin is holding.  Platelets are dropping so a transfusion may be in his future if they drop to 10.

 

 

 

German (pronounced Herman), his technician for today, comes in to do the vital signs. THEN we finally get to go back out to finish the walk.

 

He rests a bit when we return and then I encourage him to do the spirometer before lunch since he has to do his PT and other walk after lunch.  He manages to push it to the top once and to 2250 a couple of times but clearly his lung capacity is less on this day at this time.  Still good though considering his situation.

Lunch comes and he plods through vegetarian lasagna, green beans and fresh fruit.  Of course within 10 minutes of lunch delivery, his nurse, another Katie, whom we later come to refer to as Scarce Katie,  comes in for the one and only time today, to give him today’s neupogen shot.  Not sure who she is talking to on the phone but I sure hope she was busy with some other patient as the reason for her scarcity during an entire 12 hour shift.

She says “can I scan you” which I think is hilarious.  I know she means that she has to scan the drug and his wristband and they have to “match” before she can give him the shot.  But I’m picturing him on the conveyer belt running through the Whole Foods scanner head first.

 

Eating his lunch takes about an hour and then he wants a nap.  He naps in his chair, lights out, for an hour.  With the sign on the door not one person interrupts him although I don’t see how the snorting snores don’t wake him up.

When he does wake up, he goes back to work on eating his salad and says that this loss of appetite sure does make eating take a long time.  It’s true.  His lunch was served at 12:40, it is now after 3pm.

He feels less well today than at any previous point.  The drop in numbers is beginning to be felt.  But for an Olympic eater, the worst part is the lack of appetite.

I go out to get another cup of ice for his water and find Jerry and Nancy walking the halls.  Yes I finally have their names.  Jerry’s had a blood transfusion so his numbers must have dropped further down than David’s.  He does not however have any mouth or throat problems.

When I come back in  German is back for more vital signs.  No fever, fine blood pressure and oxygen saturation.

Time to do his PT exercises.  I count them off for him.  Because his platelets are below 30, he’s not allowed to use the resistance bands for his arms so he just “pretends”.

While he’s resting between PT and his second walk he reads the two cards that have been delivered today along with all the “business” mail that Carrie has sent.   The cards are much more interesting and turn out to be the best part of this day.

 

 

Rest over, time for another walk.  We do all six rounds and he seems fine.  I get my dinner prepared and eat it so I can read to him when his dinner is delivered at 5:40.  He finishes his eating in just an hour but says he doesn’t feel well.  I wonder if he has eaten too fast.   He can’t pin point exactly what is wrong but says it’s his stomach.  He thinks he might feel better after a nap even though it’s a bit late in the day for that if he wants to sleep at night.  But I tell him that he needs to listen to his body and if it wants to nap and doesn’t particularly sleep all night anyway then he should go with it.   He says there is no reason for me to stay while he sleeps.  He’ll try to do his last walk when he wakes up.  I’m a bit concerned about leaving him when he doesn’t feel well but he insists that there really is nothing I can do and I suppose he is right.

He emails me later that Scarce Katie apparently left the scanner off its charger for the past 7 hours and its beeping woke him up about 15 minutes after I left.  No one came so he had to get up and go out to the nurses’ station to complain.  Now I know why I should have stayed.  Since he was up, he went for his walk.  After 3 rounds he was feeling worse so he let it go at that.  He can’t pinpoint anything that anyone could do to help him feel better so he says he’ll try a Turner Classic Film.  I hope it works.

Today definitely wasn’t a great day, actually his worst so far.  It is clear at this point that the low numbers are beginning to affect more powerfully how he feels.  I’ve never experienced seeing him both having trouble eating and feeling worse afterwards.