Day +18 – Marking time

Friday August 3, 2012
Quail Run RV Resort Lot #15

 

Not much to report today.  I go out running as usual.  It is hot as usual.  I slog through it as usual.  I come back and do my stretches outside, lift weights inside, shower, and have breakfast as usual.  

David’s fatigue seems to be increasing.  He is still having significant trouble sleeping with only an hour or less at one time.  Sleeping medications are not helping.  But the good news is, he doesn’t have significant back issues, the abdominal pain is less severe and he hasn’t had any nausea in 4 days now.

He is still in bed when I get back and is really lacking energy.  He eventually gets up and gets dressed and has breakfast but with no enthusiasm.  He just has no oomph at all.   He goes out for a shorter than Lettuce Lake Park walk around Quail Run.  He is tired when he returns and his feet are some what swollen.  We prop his feet up on pillows, and he lies down to listen to a book on tape.  He falls asleep for an hour less than 3 hours after he’s gotten up.

 

He wakes up to eat lunch, spends a little time on his laptop and then it is time to drive into Tampa for his 2:00 appointment at Moffitt.  They take his blood and we wait 45 minutes for the results so we will know them without having to wait for a doctor to sign off which is required before they can be posted to a patient’s MyMoffitt on line portal.

It is very nice to have all of your medical records available to you on line.  But today is Friday and it is possible that these results won’t get signed into the system until Monday.  So we wait. 

 

 

While we wait, David sleeps.  He wakes up just as I am taking this picture with my phone since I have not brought the camera. 

Seeing people lying on the sofas in the BMT waiting room covered in blankets is not a terribly unusual thing.  No one bats an eye.

We get the numbers which show some positive change.  I am mostly concerned about the white cells which had made a great come back but are dropping again rather rapidly.

 

 

 

 

 

Here are the last few days of numbers.  Red indicates low.  Black indicates normal and the blue is the current concern as it edges in the wrong direction.

 

We drive back and again he watches the Olympics with his computer on his lap and dozes.  We have dinner, he takes his temperature for the 2nd time today, and we go for another short walk in the sprinkling rain.

When we return, I suggest he send an email to his Myeloma Doctor about the WBC count since he didn’t see a doctor at this blood draw and isn’t scheduled to see one until Tuesday.  He thinks it is a good idea and composes and sends the email. 

He is doing more sleeping now than at almost any point since his transplant other than on his worst day in the hospital.  He says he just has no energy, is totally fatigued.   I would not be worried about this at all if his WBC weren’t moving down rather than up.   But most probably his body is just making him slow down and mark time while it gets reorganized.

Although during the walk he complains about not feeling well and is very sluggish, after this second walk he seems to have a little more energy.  At least he’s not nodding off in his chair yet.  Maybe he’s actually just discovered he’s a night owl.  Anyway, I fix him a dish of ice cream.  Good for whatever is the matter RIGHT??   As far as I know only neupogen shots will for sure raise one’s white blood cell counts.  It’s been exactly a week since he had his last one of 5 post transplant shots.  Maybe, I’d better ask the great and wise Google whether ice cream raises White Blood Counts.  Ice cream to the belly is a lot more fun than a needle shot to the belly.

Day +17 – return to Winnona

Thursday August 2, 2012
Quail Run RV Resort Lot 15

 

 

FIRST:

Happy Lammas to those of you who celebrate the wheel of the year.

It’s Mid-summer, Half way to Fall Equinox, a first harvest celebration.  Bring on the ripe juicy tomatoes and corn!!  YUM!!   Great excuse for a party!   I particularly like RED RED tomatoes and white corn.  But white is hard to come by unless you grow your own so lately I’m having yellow or at best “bi-color”.  Makes me miss my garden.

 

 

Today is the day for corn and tomato salad for dinner or maybe tomato and corn tortillas (with some avocado thrown in for fun).   What do you think??   Both?

 

 

 

SECOND:

HEADLINE Tampa: 
Pink Mass identified as villain.

 

And now for the educational portion of this post - Educational  in some way other than medical.   I must advise  you that none of us managed to guess the real identity of the pink bubble gum/fungus on the cypress tree.  David stopped this morning at the Lettuce Lake Visitor’s Center to inquire.  They are all too aware of the presence of the exotic invasive Channeled Apple Snail.  This is a BAD guy.  They lay so many eggs so quickly that it is nearly impossible to keep up with eradication.  They eat native aquatic vegetation at a rapid rate and have spread throughout Florida.

In tests, they have been shown to consume almost every submersed aquatic plant species offered.  Young snails may become reproductive as early as 2 to 3 months of age. In Lake Linda in Lake County, they have removed essentially all of the aquatic plants present in the lake.
Like native Pomacea, channeled apple snails possess both a lung and a gill, as well as a snorkel-like siphon through which they can breathe atmospheric air, at the same time reducing the risk of attack by terrestrial predators. They can resist desiccation by closing their shells using their opercula, as well as by estivating (similar to hibernation) in sediments for up to 5 months. They can tolerate salinity to 8 parts per thousand, and seem unaffected by nutrient enrichment and low oxygen levels. 

This is one tough customer.  If you see them or their egg masses.  Report them or remove them.  I’m going to carry gloves on my hikes from now on along with my ever present trash bag to clean up after the less thoughtful.   How about you???

 

THIRD:

After a total of TWENTY long days, David has returned to Winnona!!

We get up this morning and have our last scrambled eggs and accompaniments breakfast courtesy of the Residence Inn.  David takes a morning walk over to Lettuce Lake where he checks on the pink fungus question while I pack everything in the room for our departure.
Somehow I manage to stuff all the stuff into the car and to squeeze David in too.  It is AMAZING how much stuff we had between the things he took to the hospital, the things they sent him home with and the things I brought to the half way hotel.

 

David gets the food back in the refrigerator while I bring the rest of the stuff into the rig and work on putting it away.  I had to take the J-M-C along to the half way hotel of course, so he’s making it fit back in the freezer.

Time for lunch.  I make him a milk shake to go along with his sandwich.  Wish I’d gotten a picture of it.  Although since you couldn’t taste how good it was, you probably don’t want to just look at it.

Then he goes back to the new normal of watching the Olympics while I continue to empty bags.  This time he watches Table tennis and declares it to be “amazing”.  As you can see, he hasn’t put “all” his things away.  But I have gathered them together in the front of the coach so he can see what he’s up against.  :-)

 

Lunch, milkshake and Olympics make him sleepy so he naps for an hour while I have my lunch, work on the blog and our financial spread sheet. 

When he wakes up, he gets MOST of the piles put away.   I’ve had a very light lunch so I begin dinner preparations for an early dinner.   It is a Lammas 1st harvest celebration.  I have the light version, he has the more calorie pasta version.  One of the benefits to me of being back with Winnona is not being tempted by all that not so good for me food.

But this dinner was delicious and very good for me.  You can see which first harvest dish I chose.

 

 

mmmmm good!

 

After dinner David does whatever he’s doing on his laptop, grumbles that he missed Beach Volleyball at 5:00 and Handball at 6:00 and then falls asleep.  It’s now 6:50 and I don’t eat dessert after 7:00 so here’s what he is doing and here’s what I am doing.  He’s too busy to take the picture.  HA!!  Who’s having more fun????

 

 

 

 

When he wakes up, he does the dishes while I read and then we go out for a short walk.  His energy is best in the morning and even with frequent naps it runs down hill all day long.   Today fatigue has been his biggest side effect.

 

We end our walk over at Jo Beth and Catherine’s where Karen and Al have joined them for a “happy hour”.

 

 

It’s been a busy day and he needs to get more rest so we don’t stay long but it is good to be back with Winnona and our friends.

Day 16 – shhhh don’t tell

Wednesday August 1, 2012
Quail Run RV Resort Lot 15
Marriott Residence Inn room 118

 

Today was the day for a little less togetherness. 

So shhhhhh don’t spread this around.  The patient was sleeping when I slipped out to run over to Lettuce Leaf Park in the heat of the morning.  It was a cloudy morning which was helpful and then it rained while I was running which was even more helpful.

About an hour later when I let myself back in the room, there he was dressed and sitting in a chair reading email.  He had gotten up, gotten dressed, gone out and gotten his breakfast from the kitchen, come back and eaten it, made his bed and put away the sofa bed so the room looked neat and tidy. Out of the hospital only 3 full days. 

Color me IMpressed.

And THEN he decides he wants to go for a walk before he takes a nap.  But I really have to go up to Quail Run in order to get the information on arranging for my father’s medical appointment tomorrow.  I didn’t remember to bring it but I have to call and arrange his transportation.  It’s also August 1st and I need to pay our monthly rent for August and our July electric bill at Quail Run.  Also need to throw the water off those slides. Sooooooooo

I make an executive decision and tell him to take his phone and go on out for his walk rather than force him to come with me just because the guy who says he doesn’t need a mask says he does need a 24/7 attendant.  We both know this is just no big deal for him.

 

Back up to Quail Run I go.  I know this route well enough to drive it in my sleep.

I get the information on the number to call for VA Transportation, make the call, sit on hold about 7 minutes, and then my phone battery says beep beep, sorry I’m out of energy.   So I hang up, replace the battery, call again.   I’m on hold again and about 5 minutes into it when my phone rings.  It’s David.  OH NO I think and I’m getting ready to jump in the car and high tail it back.  But he’s calling to tell me everything is great and he’s having a wonderful time.   Whew…….feeling justified here.   So I call VA Transportation again and once I get through the if you know your extension….. and then the press 2 if you want….. someone actually comes on the line.  Less than 5 minutes and it is all arranged. 

I call my dad to remind him they will be picking him up at 9am.
I walk up to the office and pay the rent but the electricity bill isn’t ready yet.   I go back to Winnona and call David who says everything is fine.  He’ll call me if there is any problem. ALL RIGHT! 

I walk over to see Catherine, Jo Beth, Grace and Phiona.  Phiona is a beauty that’s for sure.  Grace is charming.  Catherine and Jo Beth gracious as always.  They are parked just a street or two over from us so when we get back we’ll be able to see more of them.

It starts raining while I’m visiting but it’s a short shower so after it finishes, I go up on the roof and sweep off the water.  And then it’s time to head back.

He’s doing great!

When I walk in David is sitting on the sofa watching the Olympics.  He says he’s had a nap, had some lunch and is feeling pretty good.  No back pain just now.  Not a great sleeping night but not terrible.  No fever all day.  

He took the camera along the boardwalk at Lettuce Lake Park today and I’ve made this slide show of his walk.  If you know what the pink “caterpillar”???  on the cypress tree is could you let us know??
Sure looks dayglo doesn’t it?

 

 

Life is moving back toward normal where we more frequently each did what we wanted to do.  Things are definitely looking good.  Not sure how much longer we’ll be staying at the Residence Inn.  It’s wonderful being so close to Moffitt and Lettuce Leaf Park and having the hotel make breakfast every morning but even at the reduced rate afforded Moffitt patients we are paying two rents.  One for us and one for Winnona.  I was really happy to spend the time in Winnona and wasn’t all that excited to come back to the hotel.

He spends the afternoon watching Olympic rowing and volleyball AND answering emails.   Multi-tasking, things are definitely looking up.  :-)

 

At one point he looks up the Olympic TV scheduling on his laptop and comments “If I’d gotten up at 5am I could have seen women’s hand ball.”   HA!  RIGHT!!   You, 5AM, not likely even if you were at your physical best.

He used to be a hand ball player as well as a basketball player and a volleyball player and a table tennis player and a racquetball player and a kayaker and he spent a short stint on the swimming team so these are some of the sports he’s particularly interested in.  I on the other hand have always hated anything that had a ball in it after making it a habit of getting hit by any ball in any sport I ever tried.  Gymnastics was the only thing I was ever the right size to do.  But that gives us a lot of Olympic games of interest.

 

Again in late afternoon he begins having troubles.

I notice his feet and ankles are swollen and insist he lie on the sofa with his feet on pillows. He complains of stomach pain which saps his energy.  He takes another nap but that doesn’t solve the stomach problem.  We go out for a short walk but that doesn’t help.  We have spaghetti, garlic toast and broccoli for dinner.  But that doesn’t solve the problem either and he lays down on the sofa again.  I wish I’d brought the heating pad back with me from Winnona today.

I can understand his energy flagging later in the day but this is the second instance of stomach pain.  He had a more severe episode in the hospital on his next to last day.  We don’t seem to be able to discover either what brings it on or what takes it away.