Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

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

Day  4 030

 

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. 

 

Day  4 027

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.

 

Day  4 003

 

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.

 

 

 

 

 

 

Day  4 011

 

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.

 

Day  4 004

 

Day  4 005

 

 

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.

Day  4 006

 

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

 

Day  4 032

 

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. 

 

Day  4 018

 

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. 

 

Day  4 020

 

Day  4 015

 

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.

Day  4 022

 

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.

 

Day  4 023

 

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.

Day  4 024

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.”

 

Day  4

 

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.

20 comments:

  1. It has been a long day for you both for sure. So sorry sherry that it took so long to get back home. Hard to deal with when you are tired for sure. David you are looking great!!! The stamina will return. So sorry the nausea is still rearing it's ugly head. Hopefully they will provide a script for anti nausea meds upon discharge. Sherry I love your red cart how handy. Hoping David is sleeping better. Thinking of you both and praying for positive results. Take care. I was concerned while watching for today's update...glad to know the day was not too bad.

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  2. I wish I could help with David's computer problem, but I barely can spell "IT" let alone fix something.

    All I can offer is to send you a voodoo doll of Bill Gates so you can cause him as much agony as he's caused you... :c)

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    1. Hey Paul, Send the doll on. We'll definitely use it. David downloaded another browser and everything works fine. The problem is definitely IE 9. Don't upgrade. I'm still using 7 and have no intention of upgrading until they force me, which is exactly what they do if you buy a new laptop. grrrrrrrr

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  3. I was getting a little concerned. I imagine you ARE tired. It's been a while since I've driven a stick, but I wouldn't want to be using it on 75 with the traffic backing up. Glad you got home safely, Sherry.

    It appears that your healthy lifestyle is paying off. David is amazing that he can walk as far as he's walking. I'm sure his diet and exercise regimen has a lot to do with it.

    Mary has had to have quite a few blood transfusions, and felt better after getting each one. Hopefully, she won't need any more.

    I did the very same thing with the vacuum I have. You seemed to have dealt with it with few cuss words than I did! That's one reason I prefer the bags. Now I have a small Eureka with a bag, a filter inside AND a Hepa filter. Inexpensive, but great suction. It's a small canister, but with Jack's hair I can almost fill a bag with each vacuum once around the house. At least it doesn't blow out the odor that my old upright did, and I have mostly wood floors so the one I have does me fine, and has an attachment for the one rug that I have.

    You didn't say if David got a better night's sleep. I'm hoping he did, and I hope you sleep well, tonight.

    Hard to believe that it's been a whole week since the Melphalan. I am hoping that David, who seems to take everything in stride and is a model patient, will have few if any side effects.

    Good night, Sherry.

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  4. When I was a backpacker I always got cold after eating dinner, which is why I always crawled into my sleeping bag and ended up falling asleep before dark. I was told that my body was using the food energy to digest my food rather than keep me warm. Don't know if there is a connection, but evidently David's food energy is going for something else besides keeping him warm. If you find out anything about it, I'd be interested in knowing.

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  5. ahh, Sherry, may tomorrow be a bit easier for you. Vacuums! When I was a very young wife, my husband sold vacuum cleaners door to door. We managed to get a couple at the church to let us demonstrate. He was doing fine, and wanted to show them how powerful the Rainbow vacuum was so he hooked it up to theirs to show its greater suction. Sales ploy he had practiced often. Of course, the vacuum blew apart and dirt ended up all over their white sofa and white carpets. One of my more devastating moments as a young wife. Needless to say, he didn't sell the vacuum to them.

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  6. We have a mini Dyson, which I can't seem to learn how to use (*snicker*).

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  7. oh, Sherry, you are so strong and so brave...Emptying the tanks, trips to the hospital, being so strong for the man of your life, computer and vacuum problems.... Every time I whine about something, I need to stop and think of you and your David and continue to keep you in my prayers.
    Is there a Costco or Sam's club where you can buy a BIG Box of Almond Joys? :)
    Sending ((((((((((hugs)))))))))) your way.

    ~Betty

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  8. i abandoned IE long ago and prefer to use mozilla firefox.. our mileage may vary.

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  9. We have the same vacuum and have done exactly the same thing- that little door at the bottom has a mind of its own. So happy you like the cookies. We will get you the recipe and more cookies.

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  10. A long day ending with a traffic jam -- not what you needed.

    I seldom use IE anymore, except at the office, where we have PCs. Our MACs have Safari, and I've downloaded Chrome as well to have a second browser to test problems.

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  11. Sounds like the second "clean up" was far worse than the first with the vacuum. I like the "lightweight" part. We have central vac (which I love for a big house) - but I also have a very lightweight plug in model that I use for quick cleanups. David looks wonderful. His tan legs and purple socks are a hit... and it is good to know that he is not a "fall risk." I am hoping that the diversity in each day there makes it a little more manageable mentally. Just being in the hospital that long is a challenge.. not being able to go outside. David... keep up pushing that walking... sounds like you are the athlete of the floor! Sherry - you are doing a wonderful job for the two of you.. not easy I know. You are both in the battle of a lifetime and using good weapons to fight back... positive energy and strong will. I know that you both know that you just have to take it a day at a time... perhaps an hour at a time... and do the very best with each challenge. Obviously you have both done this. You are constantly in our thoughts and prayers.

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  12. Be sure and put us on your Verizon list;o)) I am still amazed that David is able to do as much as he is doing. I believe his stamina is amazing for where his blood numbers are at. Keep up the good fight!! Glad you found that IE9 was the issue and David got his laptop connected. I also can't believe how well the two of you look in the hallway picture. Says something for your healthy lifestyle:o))

    Know we think of you both everyday!!

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  13. I had to laugh at your problem with the vacuum cleaner. I don't have the same type of vacuum, but it must be made similar because I have done the exact same thing....(more than once too).

    I have Windows Home Premium on my new laptop. I use Google Chrome (per Rick's recommendation) and have no problems. I'm not a computer whiz, so maybe I'm not understanding your problem, but mine works just fine.

    I'm gad David is still doing okay. It's certainly understandable he would be out of breath with those low red blood counts. I think he's doing remarkable and I'll bet better than his counterparts.

    How's the sleeping? Any better?

    We just came in from a walk at 8am...and you are certainly right...the humidity is awful. I think I could sit outside only as long as I had a fan or a breeze.

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  14. So glad that the little red cart is coming in handy - and multi-functional at that! Warm wishes and big hugs are being sent to both of you! :-)

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  15. I have Windows 7 Premium 64 bit vs. 32 bit, whatever that means. I use Chrome. It works ok for me but I still prefer XP over any of them. Unfortunately, you can't get that anymore.
    Glad you got your Almond Joy fix. I love them too, but now, I'll spend the day humming "Sometimes you feel like a nut, sometimes you don't!" :)
    Hope you both have a better day today.

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  16. So very glad David is doing so well! Walking is a good thing. :) You certainly deserve all the Almond Joy you can get. I prefer Mounds ;) Since I started following your blog, I have boarded the cancer rollercoaster yet once again. Had breast cancer 11 years ago and this time it was found during appendectomy. I'm Wearing Yellow and LivingSTRONG. Will keep sending positive energy to you both. Enjoy each other and the moment. :)

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  17. Sock codes and snack carts - that hospital has it all! I do think Dad's overall health is helping him be the most 'fit' one on the floor - I am not surprised that not sleeping well with all kind of drugs coursing through the veins would make someone tire quickly - overall, it sounds like he is coping as well as can be expected and they are taking good care of him. Are there other anti-nausea pill options maybe? I could just see the face you probably made when that vacuum exploded - grrrrr!! Too bad there wasn't an AM traffic channel for that ride home - that is definitely exercise for the clutch foot!

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  18. Glad that David is still got some stamina, even if it wanes a bit. We're so glad that he's looking terrific! Sherry, you need a break for sure :) As far as browsers, I used to be a Firefox devotee, but am a Chrome person now, even if it means more Google products on my laptop. They seem to have the monopoly on things now :)

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