Day 15 – tiring day

Tuesday July 31, 2012
Quail Run RV Resort Lot 15
Marriott Residence Inn Room 118

 

David’s alarm goes off at 6:15 and by 6:35 we are dressed and on our way to the morning buffet of which I AGAIN forgot to take a picture.  The kitchen give him a to go box to go and I get my breakfast from the buffet.  We take them back to the room to eat them.  He tells me he slept even better last night.  3 hours at a stretch.  I’m very glad for him.  My night wasn’t so good and I’m tired this morning.

By 7:00 we are on our way to Moffitt.  Good thing it is only 4 miles away since in the traffic on Fletcher Avenue in Tampa it takes 15 minutes to get there.   We arrive at the clinic at 7:17.  Our appointment is at 7:15 appointment for a blood draw.  There is only one other person in the waiting room.

 

I object to appointments this early since I have learned by experience that they try to book everyone early and thus that is the least efficient time to go.  And I am right.   They do not actually draw his blood until 8:15.  We have waited an hour just to get the blood drawn unlike Sunday when our appointment was at 2:15 and we were out by 3:30 and done with everything.

We are supposed to have an 8:00 appointment with the PA after the blood numbers come but that doesn’t happen until after 9:00 and by the time we are totally finished we have been here 3.5 hours not 75 minutes.

But the news is good.  Two of his numbers are up.    

His White blood cells were at 10.48 on Sunday.  The normal range is 4-10.9 so he was actually at the high end of normal.  Today they have moved back toward the middle at 8.26.   This is good.

His hemoglobin was 8.8 on Sunday and is 9.0 today.  Normal is is 13.4 – 16.9.  Slow movement in the hemoglobin.

His platelet count on Sunday was 26 and today is 50.  Normal is 143-382.  Nice almost doubling of the platelets but still a VERY long way to go.

We have never met this PA before, he doesn’t know David or his story, but he tells David that he’s making excellent progress.  He says he doesn’t have to come back until Friday.  That’s 2 full days with no doctors.  Sounds GREAT!!  He also says that if things continue this way in Friday’s numbers then David’s next appointment after Friday will be the following Tuesday and they will remove his central line.  All of this sounds terrific.

When I ask how long he’ll have to wear a mask the PA says he doesn’t have to wear it anymore.  Really?   I’m not so sure I buy this story.  He just got out of the hospital 3 days ago.  I suppose it’s a matter of numbers.  If your white count is in the normal range you don’t have to wear it??   But his was in the normal range on Sunday and no one said anything.  And these are white cells which have lost all of their immunity.  

We haven’t even had time to write Quack Quack in orange pen on the beak.   I suggest he keep the mask on at least in the hospital and other places where there might be crowds.  He does.   I think I want a second opinion on this mask removal thing.

After the appointment we walk from the BMT Clinic down to the first floor and then over to the Inpatient Building and up to the 3rd floor where he asks about mail.  His Niece sent him a card and he didn’t get it before being discharged so he wants to know if they have it.   They tell him that when they get things for discharged patients, they send them over to the Clinic.   So he’ll just have to wait and hope it shows up.   On the way back to get the car walking through the hospital he is tired and sits down for a while and calls the Clinic just to check and see if they have it but they don’t.

When we get back to the room it is time for lunch after which he takes an hour nap.  He was very tired from the hospital visit.

He gets up for a bit and then is falling asleep sitting up so he takes another nap which is interrupted by the jarring ring of his cell phone.  I answer it but not quickly enough to keep it from awakening him.  It is a nurse calling from Moffitt to schedule his line removal for next Tuesday.  The only appointment she has will necessitate his waiting over 2 hours from the end of his appointment until they can get him in for line removal.  That will again make for a very long though not as early a day for him.

My sister in law calls to discuss my father’s doctor visit on Thursday.  I’ll be calling for transportation for him tomorrow and she has contacted the VA to ask that he be evaluated for home care services.   She is really a great help to me now.  I think she is a saint to be doing this for her father-in-law when his own son is not involved.  I am not happy with my absentee brother passing his responsibility off onto his wife whose mother in Ohio is also elderly and requires help.

He reads some emails, says his back is bothering him and then starts falling asleep again.  So he goes back into the bedroom to nap.   It seems that in spite of his good night of sleep possibly his long walk yesterday in addition to the 3 hours this morning has taken a toll on his energy.

While he is napping, I write an email to his Myeloma Doctor and ask for a second opinion about the mask. In less than half an hour I have my answer.  He doesn’t need to wear it if his neutrophil counts are > 1000 which his are.  So she seconds the opinion.  He’ll be all over it.  And I’m very impressed with her quick response.

David is back up at 4:00 complaining that it is cold.  I look up at the thermostat and it reads 74.  We keep the temperature at 77 or 78 but it keeps moving itself back to 75 and then I put it back up.  But this time it moved itself to 74.  A thermostat with a mind of its own.

He turns the TV on for more Beach volley ball, this time it’s the men with 6’ 9” Dalhausser playing Spain.  Score is tied at 18 when he turns it on.   He’s doing commentary….”those guys are amazing, they jump straight up in the air.  Two huge guys with their full force slamming that ball.”   But the US loses this match.  21 to 19.

I fix salmon and broccoli for dinner.  Catherine’s Custom Cookie is dessert.   David wanted to go out for a walk but has discovered that for reasons we don’t understand, his feet are terribly swollen.  He really hasn’t been on his feet that much today.  Most of the morning was sitting waiting and most of the afternoon was lying down.  He takes his temperature and finds it is 99.2.  Not a big deal but up.  More than his usual 98 point something or 97.9.   He also says his back is bothering him again.  So he lies down on the sofa and I put pillows under his feet.  

I go out to the lobby to check out today’s “hospitality hour” which is listed as being nachos night.   Sure enough there are quite a few people eating and getting nachos.  There are the big nacho chips and the regular heated cheese to drizzle over them.   There is also a spinach topping which I prefer so I bring a small container of them back with me.  They also have other nacho type toppings.  Grated cheese, sour cream and I don’t remember what else.   Wine is also available.   None of this is something David can eat from a buffet and he’s been saying all day he isn’t hungry.  Meanwhile, I’m eating everything in sight and having dessert for every mile.  Wish I could just hand him the 10 extra pounds all this ice cream and Almond Joy eating is costing me.

 

 

When I return I show it to him, no interest at all even if he was permitted to eat it.  He falls asleep again.   His body is definitely trying to tell him something.  And just this morning it seemed like everything was progressing fantastically.  I work on the blog and get up to take his picture napping.

 

 

He wakes up and I wonder if the camera has awakened him.   He wants to go for a walk.  His feet have gone down a little but he’ll need to put them right back up when he returns.   The park is only open until 8pm, it is now 7:05, so I suspect this is the reason he wants to go right away.  He hasn’t, we haven’t, really been outside all day.  It has become a very claustrophobic life for us both.

When we go outside we find that it has rained and we didn’t even know it.  I feel very disconnected from the natural world.  It is a hard thing for me. 

We walk for 20 minutes and turn back. I stop dead when I see this out of the corner of my eye.

 

 

I wonder what it would be like to be so powerful and free.   As we walk back we talk about their freedom - no hunting for a great campground or paying campground fees, no gasoline to buy, they don’t even have to drive in order to get to great places.  :-)

 

When we get back, He puts his feet up and watches the Olympics.  How convenient to have something so interesting on TV just when you need to do a lot of resting.   His upper back is still bothering him.  His feet and ankles are still swollen.
Tomorrow is another day.