“Paul” is reassigned and other Good News

Tuesday  February 21, 2012

 

Things have been looking up
since the end of the hiccup saga.

On Sunday David was  really hoping to get out
in the  kayaks but it was rainy and windy.
Not a good day for being on the water. 
He  felt fine and thought it was a shame
to waste feeling great and not being able to DO something.

 

Monday was treatment day # 3. 
We left here at noon.
Got to the office where they took more
blood and put him in the treatment chair.
I went off to try to run some errands.
I needed to pick up some really exciting items like
a bottle of tank cleaner, Purr water filter cartridges,
and a copy of Turbo Tax.
OH Boy!

Everything went well and we were home
by 5:00 waiting to see if the hiccup shoe
would drop tomorrow.

 
Tuesday was a lovely day, high about 76.  

I went running first thing in the morning.
The campground has really cleared out now that the “holiday” is over. 

There were only 10 folks still camped  when I ran by all 40 sites this morning.

 

  

Winnona looks all alone.  I LOVE it this way!!

But that will change as the week goes on.

 

 

 

 

David got up, while I was gone,
got himself some breakfast, got dressed
and went out for a walk. 

 

He spotted the resident Heron hanging out by the spring run
which is where the spring begins its trip to the Alafia River.

 

 

 

A pair of Ibis were feeding along the shore

 

 

 

After enjoying the spring run activity,

 

 

he walked on around the shoreline to the Lifeguard house

 

 

 

 

At the Lifeguard station, he found
the second BIG news of the day.

 

Due to the previous astute observations by former Agent
Paul Dahl, lifeguard “Paul” and his ball capped drinking buddy
have been reassigned to Wall Duty.
Well done Agent Dahl!!

 

Lots of excitement with that big news this morning
but the afternoon didn’t turn out to be quite
as much fun.

 

The kayak idea got pushed back again
since we really had to take advantage of this
feeling well time to try to get the car repair set up.
We’ve had a “temporary fix” on our
fuel return line for nearly a month now.
Today, David was able to finally figure out what the
part needed is, order it through a Honda Dealer
and get someone who charges less than $100 an
hour and doesn’t “charge by the book” in terms of
how they bill you to put it on.

For those not in the know (like me), “charge by the book”
(aka flat rate), means a shop charges the number of hours
this job is “supposed” to take according to their book.
Whose book?  Who does the book?
No idea.
But for this repair, the dealer quoted 4.5 hours.
At $100 an hour that’s $450 to put on a
$37.95 part.

 

SO

We chose to have a local well reviewed shop,
Precision Auto in Brandon Florida,
(thank you Car Talk Mechanic ratings)
do it rather than the dealer because they charge by the hours it
actually takes them to do this. 
In this case probably really one or two.

Crossing our fingers this can happen on Thursday.

 

And for those of you waiting and wondering…….

 

The most fun today and the number one
BIG news is no hiccups!! 

 Feels like we won a prize.
On with paddling tomorrow for sure!!

Paddling around the First Complication

Saturday February 18, 2012
Site #13 Lithia Springs Park, FL

 

Everything was great until dinner.

 

David has his first treatment on Monday and things go well.
He feels terrific on Tuesday but things change that evening.
We’ve had a very trying few days here since then.

 

 
David was making a delicious spaghetti for our dinner
when he got the hiccups.

He doesn’t usually have the hiccups but didn’t think much about it

 

until they wouldn’t go away.

 
He tried all of the home remedies,
drink warm water slowly, breathe into a paper bag,
hold a lung’s full of breath as long as you can etc etc.

 

The only one that worked at all  was holding his breath
but within 2 or 3 minutes they were back.

 

 

 

This went on for hours.

It went on all night.

He got no sleep.

 

 

Now it’s Wednesday

We start calling the doctor.
David can’t talk, he has the hiccups.

When you say hiccups, it sounds funny.
When it’s happening to you, it’s not.

No one ever mentioned this as one of the side effects.
Well it’s “uncommon” we’re told.

They prescribe something.

I go pick it up.

He takes it.

No effect. 

It says take it every 8 hours.
He takes it every 6 hours.
No effect.
He still has the hiccups.

 

In the afternoon he lays down to
try to nap.

He doesn’t hiccup in his sleep.
IF he can get to sleep
which he does now probably because he is so exhausted
from the physical strain.

It’s over 24 hours now.

 

Try to imagine having the hiccups non stop
for over 24 hours.

 

I feel helpless.
There is nothing more I can do just now.

 

I go out to kayak on the Alafia River to do
something besides worry about and watch him.
I go out so it will be very quiet in the coach. 

 

 

 

 

 

 

All the pictures in this post are from that beautiful paddle.

 

 

 

 

 

My time on the river is rejuvenating.
I see the critters out just being themselves.
It makes me smile.
I wonder if they ever worry.
 

 

 

 

 

The clouds are gorgeous and the reflections beautiful.

 

I can feel myself relaxing.

 

 

I paddle up to a small water front community

 

 

 

 

 

where I see the resident alligator

 

Time to head back.

 

As it gets later in the afternoon, the water’s
reflections are making it more and
more difficult to tell which way is up and which way is down.

 

 

 

It feels like I’m in an alternate universe.
Kind of like our life right now,
upside down and confusing.

 

When I return, he’s awake,
has eaten the sandwich I left him,
is tired
and still hiccupping.

I make some dinner,
he takes his medicine.
He lays down for the night.

 

Thursday dawns.
He’s had a night with almost no sleep.
As soon as he falls asleep, the hiccups wake him up.
He’s miserable.
His neck is sore. 
He can’t look up or left or right.

We go in for treatment #2.
They prescribe something else

I pick it up.

He takes it.

Same story,

It doesn’t work.

48 hours of the hiccups.

 

It’s now Friday.
He has had the hiccups
non stop
for 64 hours.

I am very concerned that he will have this
all through the week-end if we don’t
get something to help him today.
Everyone else is going to have the week-end off.
I can’t let this happen.

I call the doctor’s  office.
I’m not very nice at this point.
I tell them just what is going to happen
in their office on Monday when we come in
IF he still has the hiccups.
I ask them if they understand.
I’m not proud of myself.
But they hear me.

I go do the laundry while he sleeps.
On the way home,
I pick up the prescription for their strongest potential drug
to stop these hiccups.
The one they haven’t wanted to prescribe.

 

I come back in the house, he’s curled up on the floor
sleeping with his coat over him.
I get him up, get him something to eat,
give him this new medicine and put him back
in the bedroom to sleep.

 

In no time, this medicine has literally knocked him out.
For the next 24 hours all he does is sleep.
But he really needs the rest.
I wake him up to eat and take medicine.
Otherwise he’s asleep.
Not fitfully trying to sleep and being awakened by hiccups
every time he turns over or moves but
deep snoring asleep.

 

After two doses of this medicine 8 hours apart,
on Friday, I don’t give him any more.

He has to wake up so we can see if this
stuff has really worked.

 

Finally on Saturday morning he wakes up late
but on his own.
Groggy but awake.

 
He eats breakfast.
He does not hiccup all through breakfast
and does not fall asleep with his fork in his hand
like he has for his past few meals.

 

He’s moving slowly and cautiously
but he’s moving.

He gets dressed.
Later he has lunch.
Then he goes out for a short walk.
The first thing he’s done in nearly 4 days.

 

He continues to improve for the rest of the day.
He’s nearly back to his old self.
And the best thing.
NO HICCUPS!

 

We’re crossing our fingers that this lasts
and that the drug in his cocktail which
caused this side effect doesn’t set off a recurrence
on Monday when he goes in for treatment #3.

He says he wants to go paddling tomorrow!!
The world is right side up again.

And so it begins

Tuesday February 14, 2012
Lithia Springs Park site #13

We spent most of the week-end reading up on
the treatment options for Multiple Myeloma
and getting information ready for the ‘second
opinion’ appointment on Monday
at the Moffitt Cancer Center in Tampa. 

The mood was a bit somber. 
David said he felt like he was going down the rabbit hole. 
He is a bit tired but otherwise seems physically fine
though sad and apprehensive about the end
of what he has always felt has been his good health.

Monday was an all day medical marathon. 

At 9am he went to the Moffitt Cancer Center for a blood draw. 
At 10am he was scheduled to meet with Dr. Shain
for a second opinion on the tests and diagnosis
although there is really no doubt about the diagnosis. 
We were really interested in whether Moffitt
would have an alternate treatment plan.

10:00 came and went as often happens in doctors’ offices. 
10:45 Dr. Shaine came in, concurred immediately
with the diagnosis, talked about the program at Moffitt
and their slightly different way of administering the same drugs.
He discussed his treatment plan and the Center’s
Bone Marrow Transplant Unit.

We were out of there by 12:30
and would keep the afternoon treatment appointment
at the Florida Cancer Specialists with Dr. David Wright.

And then the treatment began.   

At FCS there was another blood draw as
would be the first part of every treatment appointment.
So today we have two sets of numbers and
two different labs within about 6 hours
of each other to compare. 
That’s a good thing.

 
They did an IV drip of 20mg of Decadron
This is once a week.
and an injection of 2.4 mg of Velacade. 
This is twice a week.
He will begin the daily tabs of 25mg of Revlimid this evening.
This is every evening.

He’ll be going in for treatments every Monday and Thursday
for two weeks and taking the pill every night for 14 nights.
Then a week off of everything and start over again.
After two cycles, they will reevaluate and determine
how many more cycles it will probably take
to make remission and the transplant possible.

He may move all the treatment to Moffitt at
some point since they will do the transplant.

We got out of the office just in time to hit 5:00 Tampa traffic. 
Not a great way to end an already long and tiring day.

Tuesday dawned and David felt fine. 

Maybe even better than fine given that Decadron is a steroid. 
He was thinking this wasn’t going to be so bad.
Dr. Wright had told him many patients had no side effects
and could expect to continue living their life as they had been
through at least the early weeks of treatment.

 

So when he felt great this morning, David was of course totally in agreement with  Wright’s ideas and  went about creating for himself (and for me as an additional beneficiary)
a great vegan scrambled breakfast.

which we ate outside on the picnic table.

 

Check out this no oil “home fry”.

Afterward we took a walk over to the spring.

I really wanted to get in the water. 
I love water.  
Can’t ever get enough water.
And this is 72 degree water all year round!

 
David not so much with the water.
So he didn’t come even in shorts let alone a bathing suit.

 

Pretty soon the fish were coming up to check out my feet
.

And that’s when David rolled up his jeans and went wading!

Of course he has bigger feet,
so they ditched me and went right for his toes.

While I was enjoying myself in the lovely spring water,

David was doing this…….






and this……

I know he didn’t think I’d post these
BUT
I
DID!!!!

Guess this is what he was practicing up for – the long armed shot

Now you’d think this had been a great day, and so did we
until around dinner time.   
But that’s a story for the next post.