Day +4 – dropping slowly

Friday July 20, 2012
Quail Run Lot 15 & Moffitt Cancer Center room 3715

 

This morning I don’t have to run so I think perhaps I’ll have time to take my book outside and sit on the patio to read a bit before it gets too hot.  This is what I used to do before hospital duty. I have to get the anti gravity chair out from the basement and set it up.  I also empty the tanks before getting all the things I want for a nice relaxing read.  Since we have full hook ups and are here for two months, I generally empty the tanks weekly.  An easy chore in this situation.

Once that’s finished, I get some water, some fruit, my book, my pencil and I’m all set.  But I am sitting outside only about 15 minutes until  I began sweating.  Before David went into the hospital, we could sometimes sit outside in the morning until nearly 11:00 before being forced inside.  But today it is 81 degrees by 7:45am and the humidity is oppressive.

So I retreat back inside, leaving the chair and table outside hoping it won’t rain for the next couple of days and I can try again for a not too hot few hours on the patio.  Once inside I decide it is time to do at least a little cleaning.  Doing the floors and carpets takes no time at all if you have less than 240 square feet to do.  Way less actually given the furniture and the bed.  Sweeping the kitchen and bath areas goes quickly.   So does vacuuming.  But that’s where things fall apart.  This vacuum cleaner has no bag.  It has a canister you can empty.  I know that the more full it gets the less the efficiency so I generally empty it every few times I use it.  I take the canister off the vacuum and must have mistakenly released the latch because POOF.  All the dirt, dust, sand and other yucky stuff drop all over the carpet and the vacuum itself.  Of course it also flies up into the air.   It takes about 6 times as long to clean it up as it did to vacuum.  Lesson learned.  Take the entire vacuum outside to take the canister off.  Although I’m pretty sure I must have pushed the bottom release button by mistake since I’ve never had this problem before.   Sorry no picture.  Too busy cleaning up the mess.  But here is a picture of the vacuum which I do love by the way.  It’s just the right small size for an RV and does a very good job, as far as I can tell.  It’s a Hoover Nanolite shown with its handle in the up position.  It telescopes into the base for easier storage

 

Needless to say, this put me behind.  So I get my lunch/dinner into my lunch bag, get the laptop, my book and my other stuff into their bags and put it all into my little red laundry cart – thank you again Dan and Trisha – which has now turned into a Winnona to hospital cart.  I put the cart in the car and off I go arriving just after the Physical Therapist leaves. 

 

This is the second time she’s been here.  He has multiple exercises for his legs and arms.  The arm exercises use an elastic rubber band.  Since I missed him doing these today I’ll get some pictures of him doing them tomorrow when he’s all on his own for them.  So you can look forward to that.  HA!!   About like he does I suspect.

 

 

When I arrive, he’s sitting on the sofa trying to be in the sunshine which isn’t shining in that far anymore.  He’s working on his laptop.

 

 

 

 

 

 

 

For the sox watchers among you, here’s a close up.  He has on my personal favorites today. Hope you can see the bear paws. But alas, for those like me who also love the yellow ones, he can’t wear those on this floor since they indicate to the staff that he is a “risk of falling” patient.  Those came from the Bone Marrow Biopsy folks who must have different “sock codes.”

 

 

 

I check his numbers.  Still dropping.  Still slowly.  It appears his WBC count will be at zero by Sunday.  At rounds this morning his doctor, Melissa Alsina, tells him that his hemoglobin and platelets probably will drop down far enough that he will need transfusions of both.

 

 

 

 

I go out to put my lunch in the family lounge refrigerator and pass the snack cart.  I see that today, unlike yesterday, it has Almond Joy.  Oh no!  A serious downfall of mine.  Maybe by the time it gets here, they will be all gone.  There appear to be only three left.  There were none when the cart came by yesterday.

 

Sure enough a few minutes later cheerful Howard comes in with a selection of IMO not so good for you snacks - candy, chips etc.  Of course the point here on this floor is to keep your weight up and with no fat and no sugar that’s much harder to do.  He asks us what we’d like.  As always I say Almond Joy and David says peanuts.  Today Howard has both.  Well all right then.  Almond Joy for dessert maybe at lunch and one of Catherine’s great vegan oat banana snacks for dinner.  Catherine, if you are out there, these are GREAT, send recipe!  J

 

 

Time to hook him up to the saline drip of the day.  He’ll be hooked to the rolling machine for the next 3 hours.  Although inconvenient, it does allow him to move, if he’s careful, between the sofa, his chair, the bed and the bathroom.

Shortly his lunch is delivered.  He moves the machine over so he can sit on his bed to eat.  He dubs the veggie burger very good and vows to order it again with lettuce and tomato this time. 

 

 

After lunch he pulls his machine back over to the sofa.  His brother Roger calls and they talk for nearly an hour.  Roger has thankfully  just switched to Verizon so David can talk to him for as long as he likes any time he likes for free.  I’m trying to make a list of all our friends who also have verizon as their service provider so I know whom to call on week-ends and whom we can call any time we please since we do not have unlimited minutes. 

 

 

 

I’m thinking it’s time to go for the walk.  But he can’t walk at any pace dragging the contraption that is dripping the saline so we have to wait until after 3:00.

FINALLY, time’s up on the saline drip and the machine starts dinging.  VERY LOUDLY.  It sounds like an elevator failure.  I get Michele and she disconnects him and flushes the line.  Now it’s time for a walk.  BUT the phone rings again.  This time it is the IT folks from the University of Virginia trying for the 2nd time to help him with a problem he is having with his new machine which has Windows 7 Home edition connecting to their network.  Again they are unable to solve his problem and will have yet a 3rd person call him back. Eventually he’ll be talking to the Director of IT for the university if this keeps up.  OH except I forgot one thing.  The Help Desk people on the Academic side don’t work for UVA anymore, they are outsourced. 

In UVA’s corporate like atmosphere, I wonder how much experience they have with the home editions of windows that microsoft puts on its over the counter machines.  I also wonder if using what I assume is a stripped down version saves microsoft money or why else they would produce it. Yes I refuse to allow my spell checker to capitalize microsoft.  Earth I will capitalize but not corporate names.  Just my tiny protest and value system affirmation. 

Back to the problem, with all those students you would think that the help desk folks, wherever they are, would have encountered every problem with every version of windows and with every version of Internet Explorer.

This is the first machine we’ve ever had with the home edition of windows on it.  We’ve always had the “full” edition of 95, 98, 2000 and XP.  We skipped Millennium and Vista as too much trouble to bother with.   We both have quite a bit of experience in IT but David is much better than I.  If he can’t manage these interfaces, I’m not sure I want to get in to any windows home edition when my machine has to be replaced.  Maybe I’ll switch to a MAC if they’d just lower the price between now and then.

 

He hangs up, the problem still not fixed and puts his shoes on to go for the walk.  Knock, knock.   In comes Mary  to do his vital signs.  He takes his shoes off.  Mary’s accent is so charming.  I ask her where she is from.  She replies West Africa, Sierra Leone.  She’s been here 3 years as a technician and says she makes much more money here than for the same work in her home.  I’m sorry she must leave her homeland and be so far away to make a decent wage.

 

 

All vital signs are OK but before he puts his shoes back on again he does his ten lung exercises on the Spirometer.  Today he is able to make it go to the top all ten times.  This is VERY good.

 

 

He is actually able to put on his shoes without any further interruption and this time we go out to do the half mile walk which is actually a bit longer than the minimum he is asked to do every day.  He walks at a good pace for most of it but I can hear him breathing as he gets winded during the last laps. He slows down a bit.  When we get back to the room, he is tired and very cold.  He remarks that he just doesn’t have “the stamina”.  I tell him, that is very understandable and remind him that he is not having to use a walker or a wheel chair like many myeloma patients who have bone lesions and that he walks the halls still faster than anyone else on the floor.   The coldness I don’t understand.  Normally if one expends energy walking fast they warm up.  He takes off his shoes and gets into bed with the sheet and blanket to warm him up.   I get him a long sleeve shirt and turn up the heat.  It is really wonderful to have individual room controls for the heater and air conditioning.

 

UVA IT calls again.  Again they have no answer.  They tell him to download another browser to see if the problem is IE 9.  He rests under the covers waiting for his dinner.

They bring his dinner about 5:45.  He gets up, changes into long pants and decides he will eat  in a different location tonight.  He has a fish sandwich which unlike his lunch has come with lettuce and tomato.  He thinks it’s trout and when I ask him “How is the fish?”  He replies
“OK”. 
“Hmmm, that good huh.  Would you order it again?"
”Probably not.”

 

 

Although he has taken a compazine at 4:30 to guard against nausea, he isn’t able to keep all his dinner down.  It appears that compazine in pill form does not work as well for him as Zofran which they have to do by iv.  I wonder what will happen when he isn’t here if he needs an anti-nausea medication?

He gets a phone call from Pasco County Mosquito Control telling us that they will again be spraying between 8:45 and 10:00.  We have asked his doctor about any problems with this when he gets back to the RV.  She says as long as he is indoors there is no problem.  But I wonder if she understands RVs?  In all the time we stayed in Lithia Springs I never saw or heard anyone spraying for mosquitoes.  When we experienced the spraying we called the county and asked what they were using.  They replied malathion.  This link to a wiki article says, among other things, “Malathion is an insecticide of relatively low human toxicity; however, a 2010 study has shown that children with higher levels of organophosphate pesticide metabolites in their urine are more likely to have attention deficit hyperactivity disorder”.  It also says one should be indoors and turn off the air conditioning.  Hmmmm that doesn’t seem innocuous.  The county seems to spray at least once a week and I wonder why.  In all the time we were at Lithia Springs they never sprayed at all.

He chooses to finish the evening with Colbert and Stewart.  At 8:00, as usual, I pack up and head out to my car for the 30 minute drive back to Winnona.  Tonight marks one week since his huge dose of Melphalan.

I take the elevator down to the first floor, stop by the night desk to pick up my keys since the “Free Valet Parking” guys have long since gone home.   Everything is fine until I have been on I 75 about 5 of the 15 miles I have to drive it and then, for as far as the eye can see, nothing but stopped tail lights.   Long story short, it takes me 90 minutes to get home and when I arrive my clutching foot is very tired of shifting in and out of first gear.   I never did see the problem and the line of tail lights went on without me on down the road although it seemed like half of them got off at my exit.  It’s been a long long day.