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. 

Day +14 Doctor Free Day

Monday July 30, 2012
Quail Run RV Resort Site 15
Marriott Residence Inn Room 118

 

I’m up at 6am but it's not light enough to go running so I post the blog comments that came in after I turned off my laptop last night.  I continue to be amazed at the wonderful comments from such caring people.  I put on my running clothes and when the buffet opens at 6:30, I go out and get a breakfast for David in case he wants to eat before I return. 

The run turns out to be a comedy of errors.  First the Garmin GPS sports watch I use to tell me how far I’ve run, total amount of time, heart rate and calories burned, can’t figure out where I am and find the satellites.  This is my fault because I turned it on initially in the room and it looked and looked and finally asked me if I were indoors.  I say yes, and it appears to be ready.  So off I go.  I run up to Fletcher Avenue and I can see as I’m going in that direction that the cars are stopped at the light but I can’t get there before it turns back to green.  So I run up, push the cross button and then run around in circles and back and forth across the side street crossing waiting for the light to change.  I’ll bet the folks in the left hand turn lane watching me were having some great conversations.  

FINALLY the traffic stops and I run across Fletcher to the park gate and find it locked.  It’s 6:55 by now so I run around and around and around the small entry way until 7am.  By now I’ve been running for 10 minutes but haven’t gone anywhere.

At 7:00 I get inside the park and decide to move my watch back to the data fields showing not the time of day but the amount of time I’ve run, my current heart rate, how far I’ve gone and how many calories I’ve burned.  BUT both calories and miles are at zero still although I’ve now been running for 13 minutes.  The watch has not picked up the satellites evidently.  So I shut it off, turn it back on and wait again for it to try to find them. 

I didn’t want to go into the bedroom this morning for fear of waking David so I need to stop and use the restroom in the park.  The watch STILL isn’t finished hunting for the satellites.  So with a bit of trepidation, I take the watch off and leave it outside to do its thing while I go inside to do mine.  I don’t want to confuse it all over again by taking it indoors.   My ears are on hyper alert for footsteps.  I’m not in any humor for a disappearing watch.

When I return the watch has managed to find where we are and I reset it although what good will it do me now since I’ve already run more than a mile?   But I run around the park which is a great place to run in the morning since there are few if any people here AND I am very lucky because usually the park does not open until 8am but this week there is a children’s camp and it is opening at 7am.   8:00 in Tampa Florida is too late in the day to be running IMO.   I learn just how really lucky I am on my way back when I see how much traffic I would be running with if I couldn’t run in the park at 7am.

I’m not quite sure where I am but at about 7:45 I start back toward the gate and the very same thing happens with the light.  It’s almost funny.  I’m too far away to sprint to the road and cross it but I have to run around and around waiting for the light to change again.  There is a lot of traffic on Fletcher with the poor working folks going to spend their days mostly doing someone else’s bidding.   I wonder again at how we got ourselves into this set up where you spend the best years of your life spending the majority of your days away from your family while hopefully doing something you don’t mind too much.  But usually not doing something that is just what you would be doing even if you didn’t have to.

Running along Telecom Parkway, which is actually a lovely road,  is an eye opener for someone who never runs in town.  So many cars going to work, so much auto exhaust actually makes me feel slightly nauseas and I’m glad to get back to the hotel.   I make myself a breakfast plate and return to the room.  I do my stretching and exercises although I’ve left the weights in Winnona.  Not sure how much good they are doing my flabby arms.  While we are stuck in Lodi, I should probably hire a trainer at a gym to map out a new exercise regime for me since my arms aren’t paying much attention to what I’m doing now.

David is up and dressed, has taken his temperature, his morning medications and has eaten his breakfast by the time I return.  He says he slept well last night.  No back pain, slept in 90 minute intervals and went right back to sleep when he awoke.  If he could get the intervals increased, he might get back to fairly normal sleeping.  But he seems much cheerier as a result of at least a better night’s sleep.  I wore ear plugs last night and put taped pieces of cardboard over all the electronic lights everywhere in the room to make it DARK so I slept pretty well too. 

I go out and get him a cup of coffee and he drinks it while eating the chocolate muffin I got him for breakfast.  He’s writing again in his record book.  He has two books, one for his numbers and lists and one for his feelings, more like a journal.  The latter gets little use.  I think in future years he may be sorry since how he was feeling about what he was going through may be much more interesting to him then than the statistics and numbers at that point.

He says he’ll take a nap now and then we’ll go for a walk.  So I begin working on the blog with no pictures except this one of Nap #1 for today.  He naps until after 10:00. 

By the time he gets ready to go it’s 10:30.  Pretty late in the morning to go for a walk in the heat. 

Before we go I suggest he have a little snack – multiple small meals – and he enjoys one of Catherine’s Cookies. (See I did save some for him) This is from the batch she and Jo Beth left on my doorstep when they came to visit Quail Run.  She put raisins in this batch because we like them even though she doesn’t usually include them.  I think she should start her own Label  Catherine’s Custom Cookies.    Looks great doesn’t it??

We walk over to Lettuce Leaf park.  I’m thinking we’ll add 5 minutes to the 25 minute walk he took yesterday.  So when we get about 15 minutes in, I suggest it’s time to turn back.  But he wants to see Cypress Dome.  Chrome dome meets Cypress dome would be the captain on that picture.  He claims it’s “just a little bit further”.  So since I know it is just a short board walk I go along.  It is a lovely boardwalk that takes you into the swamp where you are surrounded by the black water, the cypress trees and the ferns.  I take some pictures we return on the board walk and I start to head back.  Here is where he really ignores my advice and insists that it’s so lovely and he feels fine.  He claims the visitor’s center is not too far away and he’ll get some water and rest there.  Well the VC is not close by but luckily there is a playground area with water so we stop there, he uses the restroom, has a drink from the fountain without touching it and I get to use the swing set.  There is a hawk nearby calling and I’m trying to find him.  The sky views from the swing are wonderful.

But it isn’t until we start off for the road coming into the park that I spot the hawk high up in a tree calling away.  By the time we get back to the hotel he’s been out for an hour and 20 minutes and it is NOON.   SIGH………….

Thanks to a blog done last year by the famous blogging technical guru Rick Doyle of Rick And Paulette’s RV Travels, I am testing my first slide show.  I haven’t figured out if there is a way to add captions yet or to edit the photos once you’ve put them in the slide show but just managing to get it done shows what I’ve been doing with my 90 degree + afternoon while David watches Team USA Women’s volleyball against Brazil.   THANKS RICK!!!

 

 

Amazingly he doesn’t seem any the worse for the long walk and doesn’t take a nap even after the volley ball is over and so is lunch.  Can’t wait to see what his counts are tomorrow.  He really is feeling so much better.

After the Women’s volleyball on  comes women’s water polo in which he is not so interested.  So he begins composing the latest “Update on David” being sent to his family.  On February 11, he sent out the first one telling family and friends of his shocking diagnosis.   From then on, I did them and have sent out a total of a dozen.  I ask him if he could take this over now.  I’m sure his family would rather hear from him than from me.  The only problem is it takes him hours to do what it took me 15 minutes to do which is one of the reasons I’ve always done them.  I am trying to hold fast in not volunteering to rescue him to save time. 

He gets it finished, I get it posted out to family and friends.  He does slip into a nap around 4:00 but wakes up an hour later in time to see the US Beach Volley Ball team lose to Poland.  That was the game he wanted to see.  Oh Well…..

At about 6:15 we go down to see what Marriott’s hospitality hour consists of.  Cheese, crackers, apples, bananas, brownies and wine.
No one in the kitchen to get him a brownie that wasn’t on display so we come back and I give him garlic hummus and chips as his “appetizer” while I TRY to get water to boil on the Marriott’s count top burner.  After nearly an hour the water still hasn’t boiled, it’s 7:30 and we still haven’t eaten.  I’m pretty irritated as you can imagine and then all of a sudden I see the giant electric skillet I brought from Winnona.  In about 5 minutes it has that water boiling and we’re on our way to spaghetti with mushroom sauce and fresh broccoli for dinner.   Color me UNIMPRESSED with those black smooth topped burner surfaces.

He catches up on the blog starting at Day +10 while we wait for water to boil.  He’s further behind than any of my commenters.  HA!  And it’s really the This IS Your Life David Boyd blog at this point.

Time for another walk after dinner but a short one this time since it is so late.  We go out at sundown and walk until after dark.  When we come back for the first time in WEEKS, David does the dishes and I read to him from The Secret Life of Bees.  Life is slowly returning to a new version of normal that has at least some of the elements of the old one in it.   Let’s just hope there is no set back in the near future.  He has definitely had a lot more energy today.  I wonder how high his counts will show up to be tomorrow morning when we return to the outpatient clinic at SEVEN AM!!

Day +13 – First Day Out

Sunday July 29, 2012
Quail Run Lot 15
Residence Inn room 118

I have to apologize up front for the lack of pictures today.  I’m just taking a break from having to take my camera everywhere for everything we do.
Color me having a lazy day.

 

Last night, David did his PT exercises right before bed and when he laid for sleep his back hurt him all night long.  This guy just can’t get a break with the sleep stuff.   The bed is very nice so it wasn’t that.  I’m sleeping on the pull out sofa in the living room so it wasn’t that.  His back just hurt all over all night. 

Once he gets up and has some breakfast and takes a walk he feels much better.   For breakfast we walk down to the Residence Inn buffet and he picks out what he’d like.  When she sees him in his mask, the person from the kitchen staff comes out to ask what he’d like and then makes him a plate directly from the kitchen which we take back to the room.  Then I go back and get mine from the buffet.  The Residence Inn really knows what these transplant patients need.  It is a really great place to be.

They have a wide variety of breakfast choices from eggs, sausages and biscuits to muffins, bagels, English Muffins, toast, waffles, cereal, juices, coffee, fruit (dried and fresh) yogurt and all the things I cannot now remember.

*imagine picture of buffet here*

 

After breakfast he has a small bout of nausea unfortunately.  He rests and then is able to go out for a walk before it gets too hot.  We walk over to Lettuce Lake Park which is across Fletcher Avenue from the hotel.  In all he walks, at a slow pace, for 25 minutes.

 

*imagine picture of David in front of Lettuce Lake sign here*

 

The following picture is actually from last night’s walk around the hotel after I’d posted the blog but doesn’t he look like a duck??

 

At this point, I’m the odd woman out.   Everybody else in my party is a Duck.  I’ll try to get a shot of the 4 Duckies, Moby, Handy, Roxiannie and David, later this week.  But here’s a close up of Duckie David’s beak.

 

 

After the walk he rests and has a cup of coffee and a chocolate muffin he got at Breakfast.  He eats small meals more frequently to try to combat the nausea. 

I suggest he call Carrie instantly my phone rings, it’s her.  She and I are definitely on the same wave length.  :-))

He talks to her for probably 45 minutes and then I talk to her for an hour.  Her poor ear must feel like cauliflower after all that. 

 

We have a little lunch and then take a drive back to Winnona.  When I brought things yesterday he neglected to tell me that he had told the the pharmacist not to fill the medications that he already had at home.  So today before his first outpatient appointment we have to drive up and back an hour to Winnona to get them and some other things we decide we need.   I just hope we can get all this stuff back to Winnona in one trip.  I am definitely tiring of so much driving.

From Winnona, we drive directly to the Outpatient Clinic.  He sleeps the entire way.  I’m expecting they will have to transfuse him for Hemoglobin since they transfuse if it falls under 8 and yesterday his dropped to 8.4.

We arrive right on time at 2:15 in the BMT waiting room.  They call him in for the blood draw and he stays in the infusion center there to await the results.  He doesn’t have to wear his mask if he’s there but would if he were in the waiting room where I am.  I’m thinking I will leave and come back for him if he has to have a infusion so I wait for him to call and let me know.  Only one other patient comes in during the hour I am waiting.  At 3:30 he calls and says he’s talked with the doctor and is all finished.  No transfusion.  Great news!!

We then walk completely through the hospital back over to the West Wing to see if they have found his sleeping cap.  No luck.  He walks all the way back to the Outpatient area but says he’s had enough at that point and I go on into the garage and bring the car around and pick him up.   This walking counts as his 2nd walk of the day.

There are no white board numbers to easily take a picture of but here are yesterday’s and today’s numbers.  His white blood cells are making great progress.  His platelets have turned back upward and so has his hemoglobin.  All in all, good news and he doesn’t have to come back to outpatient until Tuesday.   WOW!  A day off!!

 

                   Yesterday       Today
WBC               2.9              10.5
Hemoglobin      8.4              8.8
Platelets           22               26

 

When we get back to the room, he’s tired but doesn’t nap again.  Instead he turns on the TV and watches Women’s and Men’s beach volleyball.  David has been a volleyball player for years and really enjoys playing and enjoys watching today.

Although he says he isn’t hungry, he does eat his dinner and has no problem with it.  The Olympic coverage stops in favor of the news so he moves to the side of the table with his back to the TV and tries to organize the medicines he has to take since his nurses will no longer be doing it for him.   In total he is now taking 8 meds, 2 of which for nausea and pain, are taken as needed.  No vitamins are allowed at this point so all of these are prescription drugs.  We are certainly doing our part for the economy in supporting the pharmacies and the drug industry.

 

7:00 time for dessert.   ICE CREAM! 

He watches the Team USA win the silver medal in the synchronized diving competition and then we go out for his final walk of the day.  I do take my camera for that.  I’ll let the pictures tell the story except to say that we came upon an endangered species so I took its picture for any young folks who may never have seen one.  The moon is 3 days from full and is looking very lovely indeed.

 

 

 

 

The End!

Day +12 – Discharge Day

Saturday July 28, 2012
Quail Run Lot 15
Moffitt Cancer Center Lot 15
Marriott Residence Inn

 

This morning I was up early again  with a lot of things to do in order to make today come off with as little effort on David’s part as possible.  I had washed his clothing last night late when I got home so that was done.  I had to pack up my clothes and anything else we needed or wanted to take to move in to the half way hotel room for about a week.

I wanted to get to the hospital early so I could attend the last rounds and be able to get checked in to the hotel, drop off all my things, go to the grocery, take that food back to the Marriott, drive back to Winnona and take the important foods out of our refrig and freezer (read that as J-M-C ice cream and other “stuff”) and put them in the refrigerator at the Marriott.  All before David was discharged so that he wouldn’t have to go on any of these errands given how tired he has been.

After discharge he has to have a trained caregiver with him 24/7 so if I have to go to the grocery or anywhere, he has to come too.  He can’t sit in the car and he really shouldn’t go into the store with so many people.  He has to wear a mask whenever he is outside his room and gloves if he goes into any place where he might have to touch carts or other things touched by anyone else.   The list of rules is mind boggling.

I get to his room and check his numbers.  Some ups, some downs.  Looks like he’ll probably get a transfusion tomorrow because of his hemoglobin numbers.   Below 10 and they transfuse.   Platelets have dropped for a second day but by less.   White counts are up a lot.

 

When I come in, he is again sitting on the sofa in the sunshine.  He’s had his breakfast and is on a saline drip.  I have remembered today to bring his NEW hat purchased specifically for his new doo.  He likes the hat.

 

He also received two more cards today. 
Thanks to Loree and Roger and Carol.

I walk my lunch down to the “family lounge” where I have never spent any time except to put my lunch/dinner in the refrigerator and then return to heat it up before eating it.
Then I go down to the pharmacy to pick up the six prescriptions he’s leaving Moffitt with.  He has several other medications he has been taking already at home so we will have to bring those to the Marriott as well.  According to the list the pharmacist gave us yesterday, he will be taking 10 different medications daily.

 

 

He seems to be feeling much better today but then I hear him breathing heavily and ask if he’s OK.  He gets up and moves out of the sun to his recliner dragging the machine behind him.   After a few minutes, up comes part of his breakfast.  This is the second time vomiting has followed his getting too hot.  He lays back to rest but now he has severe abdominal cramping.

 

He goes through a period of these cramps about one per minute lasting up to 15 seconds each (even as badly as he feels, he wants to me to record the times.  I find this just AMAZING).  His nurse Mina and PA Mark Honor think it may be mild constipation for which they can give him pain medication but they suggest that if he can, he drink more water and go for a walk.

I won’t detail the next hour or so but ultimately everything comes out OK.  :-))    We do go for a short walk and when he returns Sarah brings him a chocolate peanut butter milkshake (650 calories) which his nurse Mina suggests will help move his system along.   He’s very pleased with this idea since Sarah makes great shakes.

David’s favorite technician and milk shake maker Sarah brings him a shake 

It’s about noon now and his rounds team still hasn’t come.  I would really like to be there when they do but I can’t wait any longer since I have so many errands and trips to make to and from the hotel.  I need to be back here at about 2:45 so he can check out.

I race around and get it all done as well as filling up Ruby with gas and am back at Moffitt at exactly at 2:45.  I feel like I’ve done enough driving for a week.  Remember I’m the person who doesn’t like to drive or even ride.   The guy who likes to drive can’t drive until the doctor gives him the OK which will probably be at least a month.  I sure hope it isn’t more than that.  I’m not smiling about this or the 24/7 requirement.  But you do what you’ve got do.

Although they’ve changed his nurses and technicians far more often than it seems necessary to me, he has two of his favorites, Mina and Sarah, on his last day.   He says good by to them both but I only get a picture of David and Mina because by the time we see Sarah as we are leaving, I have my hands full of bags and cart.

 

At 3:45 he walks out of the inpatient West Wing of the Moffitt Cancer Center we hope forever.   We drive about 4 miles down the road to the Marriott Residence Inn.   Here he is going into the outside door nearest his room wearing the mask he has to wear anytime he’s outside of the room.

 

Down the hall leading to his room.

 

He’s getting quite accustomed to this patient stuff and goes in and lays down on the sofa and turns on Olympic Women’s Volleyball.

I put most of the stuff I’ve lugged over here away but leave his clothing and toiletries to him so they will be where he wants.  I also have to wipe down all the surfaces he’ll be in contact with using antiseptic wipes.  Table tops, faucet and door handles, telephones, remotes, lights, and light switches to mention a few.

Here are some pictures of Room 118.  It’s a one bedroom one bath suite with full kitchen.

 

 

Do I look as tired as I feel here enjoying my Almond Joy treat??

 

 

I have been too busy to eat my  lunch so around 4:30 I warm it up and call it lunc-inner.  David turns off the TV, gets up from the sofa and puts his things away after the US Women beat Korea in volleyball.  I make his dinner which he eats carefully and with no ill effects.  He takes a nap directly after.

 

It is now 7:00 and he has not done his spirometer, his PT exercises or the last of his 3 daily walks.  I’m too tired to hound him.  He is going to have to start taking some responsibility for doing these things.   I am as you have seen, very sensitive to his situation, but I really don’t think that I have to do everything.  When he’s feeling pretty good, he needs to take responsibility for them himself like he does his meds about which he is very good.

Tomorrow is his first outpatient appointment and at the rate he’s going doing the walking and drinking the water, he’ll be on a saline drip for several hours.   That’s one VERY nice thing about being at the Residence Inn, I won’t have to sit in the waiting room, while he is in their care, I can drive 4 miles down the road back to the hotel and do whatever I want. Whoopee!!  When we are back in Winnona, I’ll be stuck in the waiting room.  One Point for the Hotel!

So he naps and I type this blog.  When I finish, I’m going to have a GIANT bowl of Jamaica-me-crazy ice cream, prop my feet up and see what happens.

Day +11 – Hair today, gone to…….

Friday July 27, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

I run by Karen and Al again this morning, actually twice over in their newer section of the park.  Then toward the end of my run as I am going up and down the streets of the older section where Winnona is parked, Karen and Al are talking to Jo Beth and Catherine who have dropped by to check out the park and to leave me another batch of their famous cookies.  Thank you Jo Beth & Catherine!  I am SO set for cookies, ice cream and candy.  Sounds like a questionable diet though doesn’t it??  :-))

I had left my phone in David’s room last night and he had emailed me to tell me he had it.  So I had a hint that he might be feeling better today.
Here’s what I find when I arrive this morning.

 

 

When I arrive he is trying to return yesterday’s call from his brother Roger.  I am very happy to see him improved from yesterday.  Although as the day goes on it is clear that while he is feeling better than yesterday, he is feeling about like he had on Wednesday which is to say “tentative” and “tired”.

He tells me he got up because he hadn’t been able to sleep since 5AMand his back was getting tired of being in bed.  The sleep problem is not solved.  He reports that he was feeling pretty good so he checked his email and shaved.  He took a big drink of water because he was going to go out for a walk and threw up the water.  This is now becoming another continual side effect.  He called his nurse Mina who brought him anti nausea medicine.  He tried the walk now but only walked  a little over one lap when his breakfast came.  So he came back to the room and was able to eat his breakfast, Mina hooks up today’s potassium drip and after breakfast he takes a nap to discourage his stomach from further revolt.

When I first see him, he seems much better than yesterday but becomes increasingly “tentative” and “tired” as the morning is filled with everyone coming in one after another to “take care of things”.  He is being discharged tomorrow and since it is a Saturday, most of the people on his “team” will not be working.

First his nurse, Mina, comes in to take him off of the potassium drip.

Then Rounds crew shows up.  They of course tell him he’s feeling well and they’ll see him tomorrow before he leaves.  PA Mark Honor is back, we’re glad to see him.

Then Sarah comes in to change his bed sheets.

Then Patsy comes in to clean

Then the snack man arrives with a handful of things and David actually wants a bag of peanut M&M.  THIS is a VERY good sign.

THEN the beautician comes in to cut his hair down close.  His hair has been falling out for the past two days and he decides to just have it close cropped and his moustache trimmed very close as well to make for less hair everywhere.  Mark Honor writes an order for it and in no time……

 

 

Here’s his new look.

 

 

Then the dietician comes in to go over what he can and cannot eat.  Mostly there are no restrictions other than buffets or salad bars including places like Subway.

I think it’s ironic that after the dietician leaves he decides to eat the peanut M&Ms.  HA!

 

 

Then the “Transition Nurse” comes in to go over the ENORMOUS list of what you can and cannot do after discharge and all the circumstances under which you must call the BMT people and those in which you must call 911.   The list is literally pages long.  She gives us a bag with a plastic tub in case he vomits, a box of masks to wear outside, a box of gloves to wear, a thermometer, a toothbrush, foaming hand sanitizer, two scissor clamps and saline mouth flush.  All of this is of course because he has no immune system now.

 

Then the pharmacist comes to give him his list of medications and go over them again.  There are those he is to take regularly, those he will take as needed and those to be put “on hold”.  The latter includes all vitamins and minerals he was taking.  He has to bring this list with him to every follow up appointment at the clinic.   These appointments start on Sunday and will continue daily until his doctor decides otherwise.   So basically he gets to sleep somewhere else starting tomorrow night but he’ll be in the BMT clinic for a part of every day.

 

Then  just as she leaves, they bring his lunch.  He really has lost his appetite and just picked at his food today although he did manage to eat an entire slice of cherry cheesecake.  But he joked “who would ever have thought I’d have to push myself to eat cheesecake”.

I wish I could do a slide show of “David and his cheesecake” but I’ve spent too much time this afternoon with Picasa 3 and Live Writer with no success so here are just the stills.  If you know an EASY way to do a slideshow in picasa and get it into Live Writer please send the Dummies Guide.

The looks on his face make me laugh.

 

 

 

 

 

Then as he had JUST finished his lunch, or rather MOST of his cheesecake, the Physical Therapist comes and wants to take him for a walk and go over all the PT exercises he’s to do daily when he’s discharged.

Check out this photo.  I guess you’d be happy too if you had such a great lookin’ babe walking you down the hall.  I had declined to go along so he could have a great time.  :-))   Notice he has on his winter weather walking clothes including his ski hat.

 

 

I think he may have over done the number of laps.  He’s definitely tired and naps right away when he returns.  I put the sign out on the door and turn out the lights.

 

Then the Lodging Coordinator opens the door and I do need to talk with her about the discounted rate for us to stay at The Marriott Residence Inn near Moffitt.  So we go outside and talk in the hall.  This is a really wonderful arrangement that Moffitt has with Marriott and I have heard nothing but good things about The Residence Inn. 

 

Then I come back in the room and in 10 minutes the nurse Mina opens the door, in spite of the sign saying please look in the window, and says “Oh I won’t disturb him”.   Does she really think she can open that big heavy door, talk without whispering and not wake a sleeping person?  Well maybe someone who sleeps a lot more soundly than David.

 

Then the door opens again and it is Kay Quinn, our Case Worker, who needs to talk to me about the cost of some of his discharge meds and get a Medicare form signed.   I really like Kay.  She has been so helpful in all of this with the oh so important money piece.   She reiterates how sensitive The Residence Inn is to needs of Moffitt’s patients and tells me that some of their staff have even come to the BMT caregiver classes so they will be even more informed.  

After it taking 90 minutes to get home on I 75 a few days ago I am very happy that we will be for a while at a lodging much closer to Moffitt.  It would be terrible if there were a lane closure for construction on the Interstate, as is happening during the evenings now, and I needed to get him to the hospital for some reason.   The Moffitt discharge rules are that you must be within 30 minutes until you are released to your “home home” as they call it which they still refer to as Virginia for us.   They don’t get full timing any better than most folks.  Under good traffic conditions, Quail Run is within 30 minutes but with the uncertainty of the construction on I-75, I feel better being closer.

I know they all really do have things they need to do and they can’t always come back but this is almost funny.  He’s been trying to sleep since 1:00, it is now nearly 3:30.  His day is getting away from him.

Then his nurse comes in.  He has awakened and is sitting up just in time for the neupogen shot.  She gives him the shot in his belly and listens to his lungs.  They are on the alert for respiratory problems.

He hunts all over on the TV channels to see when the Olympics are going to be broadcast.  I had heard the opening ceremony was to be at 4:00 but he can’t find that it is being shown in real time.  He finally discovers that coverage here starts at 7:30. I’m surprised actually that he is interested in watching the Olympics.  I don’t recall that we ever have or perhaps it’s just that I never have.  This is a sign he’s feeling better.  Yesterday all he wanted to do was sleep.

He successfully does 6 breathing exercises on the spirometer getting up as high as 2250.  When he finishes Roger calls him back and they have a nice conversation.   That too is a good sign since the spirometer usually is about the most exhausting thing he does.

The door opens and in comes his dinner.  He says he just finished his lunch.
At one point he remarks that he seems to spend the whole day eating.  What a treat he would have found this just a short time ago.  And such a shame that he can’t enjoy it as this would be a dream come true for a guy who loves to eat.

I have a lot of things to do this evening, including getting groceries to take to the Marriott and doing his laundry so I cannot stay long.  But I do take a 3 lap walk around the “neighborhood” with him.  He is resting when I leave.

Tomorrow is discharge day.  It looks like he may be up to it.  Life is going to totally change again.   On the way home I realize that I have forgotten to go to the Moffitt Pharmacy to pick up those medications.  Oh dear, I sure hope they are open on Saturdays or I’m in a real pickle!