Day +6 – a reprieve??

Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

I am very excited when I get up this morning to find that while it is 73 degrees, it is dry and the humidity is down.  So I am actually able to go sit outside and read and write for about an hour.  The temperature is lovely and I wish I could hear the birds and the insects better but they are being drowned out by the I 75 noise and my new neighbor’s air conditioning.  I can’t figure out why their AC runs constantly no matter what the temperature is outside.  I have mine set at 78 or 79 and it cuts off and on so there are lots of times when it isn’t running.  Like this morning when it is 73 degrees outside.  But not theirs, running all the time.

Those who know me well know that I’m a silence fanatic.  I really love no man made or engine noises.  Sound pollution is every bit as bad as air and water pollution in our industrialized world in my opinion.  And fewer people are concerned about it or even notice.  Not to say that very many are seriously concerned about the other two.

Nevertheless, I am sorry when time is up and I have to go inside even though the temperatures are still great for hanging around.  But there are lots of things to be done before I can head out to the hospital.

When I arrive this morning, I find David sitting in his chair connected to a small bag of potassium and larger one of saline.   He’s busily writing away in his record book.  He records every single thing done to him including all his sleep intervals.  Isn’t he a riot!!

 

 

He has had his breakfast with only a slight amount vomiting.  Otherwise I am amazed that he seems better than yesterday even though his counts are down further.  He sounds much better and is back more to his normal level of brain fog.  Just kidding!  Just kidding! He does seem better today and not worse.

His counts are down again but he’s still above the transplant levels of 8 for hemoglobin and 10 for platelets.   So no transplants on the horizon for tomorrow.  And although he says his sleep was still the same series of 45 minute naps and his counts are down, he agrees that he’s feeling some better.  Good news!

His WBC is down to 0.09 from 0.21 yesterday.  It’s really moving slowly.  It will have to get to 0.0 tomorrow won’t it?   Who knows??

 

 

Patricia is his technician again today.  She is a cheerful eager to help Hispanic woman. She calls him Mr. David when she comes in to do his “vital” signs.  He  moves his machine from the chair to the bedside to enable her to get his blood pressure more easily.

After she leaves he stays on the bed holding his head up doing what he calls “thinking about things.”  I get the printed list of his blood levels from off the bulletin board and we go over them all.  What’s high, what’s low.  I discover that his potassium is not low so we wonder why he needed an infusion.

 

We shortly get our answer when the medical team comes for rounds.  His Doctor, Melissa Alsina, explains that they like to keep the potassium at 4 which is the middle of the normal range.  David’s was 3.9 today and so they gave him a small amount.  But she also asks why he has a saline drip.  The PA says he thought it was a daily order.  Dr. Alsina says now that he’s drinking more, his fluid is fine, to stop the drip now and only do it on an as needed basis.  That too is good news.  His water and ginger ale consumption is having a good effect.

Being hooked to the machine makes doing some of the other things he needs to do difficult, like walking three times a day, which he hasn’t done at all yet.  Not to mention his PT exercises, using the bathroom, well nearly everything other than sitting in the chair or lying in the bed is more difficult if you have to drag the tower of machines along with you.

I ask about the mouth sores and when he will be out of the woods for them.  She replies that usually he would have them by now so he may not get them.  It’s not out of the question still for another couple of days but it’s also very possible he may not get any at all.  Now that is really good news and it will be great if he never gets any.

Tomorrow night they begin giving him neupogen to encourage his stem cells to engraft and begin multiplying.  This will be smaller doses than they gave to him before harvest.  The neupogen may give him fevers on Tuesday and/or Wednesday.  But maybe not.  He’s clearly doing very well which his doctor confirms.

 

 

 

The group leaves and his nurse promises to return to disconnect him from the saline and to give him zofran  IV before lunch is served.  In the mean time he does his PT exercises while he waits for her.  He has a series of leg and arm exercises to do daily.  He does 10 repetitions of most of them to a count of 4.  I keep count for him.  He does all the exercises while standing.  The leg exercises he does while holding on to the foot of the bed, the arm exercises using an exercise band.

 

 

 

 

 

 

As promised, his nurse Kaitlin comes back to give him the zofran to prevent nausea, disconnect him from the machine and clean the line.

How to do curls with your exercise band.

 

 

He finishes his last two PT exercises right before his lunch arrives.  Beans and rice; his comment “there’s a lot more rice than beans here”.
He is a good boy, cleans his plate and has no stomach issues.  This too is great.  Without mouth sores, he’s able to eat well and keep his weight up.  He says he even still has taste buds though they may be “slightly impaired”. But taste buds at all is terrific at this point.  Today he weighs 136 again.  No weight loss.

While he’s eating his lunch he says something hilarious.  He looks down at his hand and says “I’d like to report that my hands are cleaner now than they have ever been in my entire life except maybe the day I was born.”  Now what brought that up???  It makes me laugh again typing it up.  Is he serious?  Or trying to be funny?  Unfortunately I often don’t know.  He inherited this from his father, and I don’t mean the hands.

 

 

“No dirt under any of my nails”.

 

Nap time.  I put the sign on the door after Patricia has “highlighted” it at her request.  Mostly it works pretty well.  Only the lunch tray pick up person knocks and comes in. 

 

 

 

 

 

 

 

When he wakes, we go out for the first of his three walks around the hallways.  It’s about 2:30.  We’ll walk again at 5:00 before his dinner comes and then he will do the third walk before he goes to bed tonight.

The walk is tiring for him but he does the full 6 laps, slightly more than half a mile, comes back to his chair and turns his laptop on for the first time today to read the blog.

His brother Roger calls, no doubt as a result of yesterday’s post about David’s down turn.  David hasn’t read the blog yet so he isn’t completely aware of what everyone else knows. 

I was hoping to get both his lung exercises and his second walk in before dinner.  They talk for over an hour so we don’t have time to do his 2nd walk before his dinner arrives  We do get the lung exercises completed before it comes.  So that leaves two of the half mile walks before bedtime.  I’m frowning over this since I think it is too much in too short a time.

He complains that he had what feels like a sour stomach while on the phone so approaches his dinner carefully, sipping his ginger ale first and having a saltine cracker before he begins to slowly eat his dinner.  Eating slowly is something neither of us has ever been good at doing even though we know we should but he does an excellent job now and it takes him a full 40 minutes to finish.  I have always sighed when it would take me at least an hour to get a meal on the table only to have it disappear in less than 10 minutes.   Perhaps he will continue this behavior when he comes home and train me to do it too. 

 

Patricia comes in to take his vital signs while he is eating.  Kristin comes in to make sure he is going to take his shower and change his clothing.  He also has to do his walks.  Time is running out on this day and I hate to see so many things he has to do pushed up against each other.  He tires easily and needs to have fairly long breaks between each one.

He takes up the Spirometer but he isn’t able to get it all the way to the top in any of his ten tries.   He gets close once but it is clear that he doesn’t have the same level of breath as previously.  I suggest we try this exercise in the morning tomorrow rather than in the evening like today.

I read for a short time as he relaxes before the second walk.  After 10 or 15 pages we set out to do the second 6 laps of the day.  He decides that since he will have to do these two sets so closely together he will do 5 laps each rather than 6.  Three is the minimum they prefer so he will still be doing more just not AS many.  While we are walking we come upon one of the other men who is on the same schedule as David.  His room is at the complete opposite end of the floor but we pass him and his caregiver walking and I ask if his WBC has reached zero.  He says no and asks if David has the vomiting and diarrhea.  David replies he’s had a very few cases of the former and none of the latter.  They reply that David is very lucky as the man whose name I forgot to ask for has had both and it is terrible.    

When we return, I help David to wash up and change his clothes.  I change his pillow case and put all his dirty clothes in it to take home to launder and bring them back tomorrow.

He seems to have gotten a reprieve from the downward spiral today but I know his counts will all drop further tomorrow.  Each day I hope that he will not get the mouth sores or diarrhea which are so common in this process.  So far, so good.  On to tomorrow.