Happy Summer Solstice

Wednesday June 20, 2012
Lithia Springs Park Site 25
Lithia, Florida

 

First of all…..

HAPPY SUMMER SOLSTICE! 

I hope you are outside in some fabulous spot in nature celebrating the wheel of the year.  Normally I would be celebrating this first day of summer outside with some special event and ritual but today I’m spending this longest day of the year in the waiting room at the Moffitt Cancer Center and it’s feeling like the longest day.  More about that later.

 

 

To catch up, on Sunday I’m sorry to leave the beach at Nokomis and lovely site 89 at Oscar Scherer state park.

 

 

 

 

I’m also sorry to leave some friends we’ve made. 

They have been visiting us daily.  Hanging out on the picnic table in the sun of course making it difficult to get a good picture to take with me.

 

 

We also have to say goodbye to Gordon, Kim and the Gypsy Wife.
This is us and Gordon.  Kim took the picture.

Then off to the dump, pick up the tow dolly which has spent the week in extra car parking, get Ruby up on her dolly and we are on our way by about 1:00. Short trip of 70 miles up I 75 so no need to hustle.

 

Well it’s an easy drive but a realllllly  longggggggg line.

We turn off of Lithia Pinecrest Road onto Lithia Springs Road a little two laner that dead ends into the park.  We go about 2 of the 3 miles and we find a line of about 50 cars and 1 RV backed up to get in the park. Clearly Father’s day is VERY popular here at the spring and when the parking lot gets full, no one can get in until someone else leaves. Sort of the way I do clothing now. Nothing comes in unless something else goes out. It takes an hour to make our way to the front of the line and in all that time did I think to take a picture of this line of cars, nope. But you know what a line of cars looks like if you are waiting in it no doubt. You just haven’t seen THIS line of cars.

 

While we sit, I walk up to the little Park Ranger check in station and go around back to sign us up for another 2 weeks. Standard questions,

Ranger: have you been with us before.
Me: Yup!

R: Any idea what site you’d like?
M: Yup. How about site 40.

R: Sorry that one’s taken. Do you have a second choice?
M: Yup. Site 25?
R: BINGO.

He fills out the little pink card, takes my $126 for the first week and gives me the car hang tag.

Before I leave, I ask
M: Any idea when #40 is checking out?

R: Well he’s paid through Tuesday but he could renew.

Well OK then. I walk back 45 cars to Winnona where we wait in air conditioned comfort in the 92 degree heat. An hour later we make it up to the front of the line and they wave us through.

That’s the penalty for not getting here earlier on this Sunday or for not checking in on Monday.  But we had no choice, all of our Monday, Tuesday and most of Wednesday are booked. So our chances of moving into Site 40 before someone else takes it are slim. More about the bookings in a minute.

 

Site 25 is not on the river. boo hoo
Site 25 is huge – yeah!

 

 

How BIG is it?  Well look at the back yard and then look at the front yard.   We did take the bikes and the kayaks off of the car in anticipation of tomorrow’s all day medical event and our need to be on the road by 7:00 am.

 

 

 

 

 

 

After the drive and the hour in line, we are tired and hungry so we do just the minimum set up.   That means no awning, no patio mat, no chairs.  Just Water/electric/level/slides.  We get some dinner and chill out for a while.

 

These next three days are long and hard hospital days and I’m going to divide them up into Part I which follows and Part II which I’ll post tomorrow.

Monday we actually have to get up with an alarm.

Thankfully cell phones have them since we certainly didn’t bring an alarm clock. Who wants one of those when they retire?
BUT now we have to go to work again at 8:15 in the morning.
We pack our lunches and are on the road by 7:00. We are part of the commuter traffic but it’s not as bad as I feared. We must be early for most commuters and so we arrive a little early at Moffitt.

 

At the end of the 45 minute drive, we pull up to the Moffitt Car Plaza.

 

This is not parking garage mind you.  This is where the GOLD VALET parking boys & girls in blue Moffitt shirts take your car and put it in the garage for you. Nice touch,  really helps not to have to hassle with parking.

 

We are here to have all of his vital organs tested to make sure he is strong enough to undergo a transplant.

 

At 8:00 he is checking in for a Pulmonary Function Test.

 

David knows the drill by now.  He signs in.  We wait. They call him, give him an arm band and we wait again. They call him for the test. Because we are early, they actually get him in early. They do the test in which they check lung capacity and the rate at which the lungs oxygenate the blood. He passes. We are finished early. One down about 5 more tests to go today .

 

 

On to the Cardiology Lab for an EKG. David checks in and we wait. They call him and check his arm band. What’s your name? What’s your date of birth? Because we are early again they actually call him early and we are finished early. Looks like his heart passes. I’m liking this business where if you are early you don’t have to wait as long.

 

And now for the finances.

 

 

Next we visit the financial counselor who informs us what our insurance will and will not pay for. Unfortunately our insurance will not cover transportation, food  or housing costs for this transplant stay which she tells us most insurance coverage does. A downside of Medicare and its supplements we find out. David cannot stay in Winnona immediately following the transplant. He has to be in a relatively sterile environment and make daily visits to Moffitt for up to two weeks. There is housing around but it is not inexpensive and our insurance will not cover it or the food costs during this stay. Bad news. But they will cover nearly everything else. Great news! So if you are going to have a really serious illness be sure to have it before you retire so that your more broad coverage will still be with you. Housing costs for us will be per night in a long term stay hotel. GULP!

 

We’re about to meet the star of the show.

 

Next, the bone marrow transplant (BMT) clinic where he checks in and we wait to be called by the funniest happiest nurse around. She comes out and hollers “next contestant, David Boyd”.  She seems to know everyone and they her.  She really perks up the entire atmosphere.  She saw me taking her pose and posed making some sort of funny comment that I can’t remember.  In a bone marrow transplant unit, she’s worth her weight in gold.  She’ll be the only thing we look forward to in the upcoming millions of visits we’ll be making here.

 

  She takes him away and draws 18 vials of blood for testing and David gives her his 24 hour urine jug. Glad it’s him having to pee in a jug for an entire day and night.

 

 

 

Our next appointment isn’t until 1:30 so we eat the lunch we have brought since we know far too much about hospital food.

We wait for the social worker. Getting here early has not done anything but make the wait longer.  Here is the only place the system breaks down a bit but it may be just THIS social worker. She told us she was there to help us deal with “things”. And then gave us some papers about housing possibilities, asked us who the back up caregiver was and told us to send her his/her phone number. We waited 90 minutes for this 20 minute experience of what was that? Hmmmmmmmm.

 

But with that lone exception I would have to give Moffitt very high marks for their making the patient experience as easy and comfortable as possible.  Oh yes forgot – except for the constant TVs.  I know others like them so it seems like every public place has them these days squawking from the walls and sometimes from more than one wall.  But I really could do without the constant chatter of Fox News.  No wonder Florida has political problems. 

 

Finally the last stop today is Radiology

Here he (repeat after me) checks in and we wait. They call him and give him another arm band and we wait. They call him and ask him his name, check the arm band, ask him his date of birth. Off he goes to do a full body bone scan. This is an x-ray to determine if he has any bone lesions which are very common in Multiple Myeloma patients. But we both know only huge lesions show up on these x-rays. If you really want to know the condition of the bones you need a CT scan.  BUT in spite of the fact that doctors know that too, insurance companies won’t pay for it.  And I wonder why does it have to cost so much and why do insurance companies get to decide what’s going to happen?  Seems like some problems on both side of this equation.

 

It’s 4:00 and we are finally finished and totally wiped out. But we still have to drive home.  When we get there David collapses on the sofa and sleeps. I try to be quiet but I’m getting hungry. Wish he were in the bedroom so I could start dinner. I’ve been sitting quite enough today thanks.

 

If you aren’t already as sick of the hospital as I am then check back tomorrow for Part II of the continuing saga of

David Gets Ready for His Stem Cell Transplant.