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

Henry David Thoreau

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.

 

Site 89 Oscar Scherer

 

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.

Site 89 Oscar Scherer (14)A

 

Site 89 Oscar Scherer (16)

 

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

Gordon N us

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!

 

Smoothie, moffitt #3 and site 89 029

 

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.

 

 

 

 

 

Smoothie, moffitt #3 and site 89 028

 

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.

Moffitt 034

 

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.

Moffitt 037

 

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 .

 

Moffitt 038

 

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.

 

Moffitt 040

 

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.

Moffitt 023

 

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.

 

Moffitt 030

 

Moffitt 021

 

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.

24 comments:

  1. Hurry up, then wait, and constantly asking who u are, when born. Like that arm band would even come off & get on someone else, for heavens sake. You are both going thru so much, but ever prepared, with lunch even. Way thinking ahead. Unlike me that would say, oh, lunch, what shall we do? Take Care & God Bless both!!!!

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  2. Oh, Sherry. My heart aches for you and David. This is tough. This is really, really tough. I know that without it being the man I love. I know that without knowing all the details that you spare your readers.

    I know at this point, it must be very difficult to see any light at the end of the tunnel. I hope after the transplant that the light becomes brighter with each day. That's all I can do for you...hope. I wish there was more.

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  3. You are both on my nightly prayer list and will remain there until the all clear. God be with you both.

    Leanne

    Laurie and George's Mom

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  4. I'm glad to hear that some of this went right - being early and getting seen early always improves my mood. Social workers always depress my mood though. Hang in there.

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  5. I was impressed with how cheerful and upbeat most of the post-transplant patients we met in the waiting room were! They are easy to spot as they don't have their hair back yet. This is the Bone Marrow Transplant clinic, so I put two and two together and knew we had something to talk about. We learned something from everyone, so waiting time was not all lost.

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  6. Wow! What a day.

    Social workers are underpaid and overworked. Having said that, who isn't?

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  7. So nice that you are able to see the humor in some of it. Also a terrific nurse in the BMT clinic. I am happy to see David smiling through all the cattle calls as well :)

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  8. Nothing ever goes totaly perfectly, but be glad, it could be worse. You could have gone to the DMV... ;c)

    The worst is almost over, keep in hanging in there. We're with ya'.

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  9. Am getting caught up again. I love your running commentary on the sunbathers. Seriously, if you're wearing a thong bathing suit, are you really wearing bottoms? Just askin' . . .

    I do not want David to have to go through all of this, but if he has to, we might as well learn something from it and compare it to our own hospital experiences. Moffitt has such a wonderful reputation that I'm pretty sure that my place of employment will pale by comparison. I particularly like the parking setup. I wonder how many "valets" we'd need to give everyone valet parking? We could cut down on 75% of the complaints if we could do it.

    There are still big "goings on" at UVA. Saints protect us from well-meaning millionaires is all I can say. Another vigil on the Lawn this afternoon and still calls for the rector of the BOV to resign and TS to be reinstated. We're all over the news all over the nation. Does that axiom "there's no bad publicity" only apply to actors?!? More soon! Take care! I'm praying every morning!

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  10. That nurse has the right attitude -- her cheer gave you cheer ... smiles count for a lot.

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  11. Glad you received good care at Moffit. I've heard good things about them. Sometimes the best information on any procedure is from those who have had it. Glad you got to pass the time away talking to others. Here's hoping for more great Happy workers! God bless you both.

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  12. We were just talking about you guys today and wondering how David's myriad of doctor appointments were going. Nurses can make a huge difference in a tough situation, and it's great to see that David has an exceptional one in the BMT clinic. She's obviously found her calling.

    Really sweet picture of your lizard friend.

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  13. Glad SOMEBODY was a positive in your day. A blessing to be sure, and that lady sure is in the right job! Hanging in there with you....

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  14. Wish there was an easy way to get better;o)) I think all the questions are part of the endurance test!!! You need to be one tough cookie to make it through. David has the right attitude... If you have to be there, might as well learn something!! You two are such great researchers that when you come back to the center, you will have much to share with those just starting out. We think about you everyday and send virtual hugs your way:o))

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  15. When life hands you lemons, you need to make lemonade and you both certainly have! Warm wishes and good thoughts are being sent your way (as always!).

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  16. Glad you are successfully moving through all the appointments. Bummer you have to stay at an extended stay hotel- I have stayed at many and cannot imagine they are much cleaner than Winona. We are thinking about you.

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  17. What a tough day that was. I spent 3 hours yesterday with my Mom at a doctors office and it was no fun. I can imagine how long your day felt. You'd think they could get more comfy chairs, wouldn't you?

    I hate that you are having to go through this ordeal, but I guess the good news is that at least it's something they can treat. Not everyone has an option. I know the weeks ahead are going to be hard. Hang in there, especially you David! Prayers to you both.

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  18. Sorry for all the waiting. I shall look forward to part 2. It's supposed to be upper 90s here today, feeling like triple digits. Miss M is of course inside. Battling some kind of eye thing (infection?) as well as constant sneezing that has her on benadryl. Poor thing. The first night the sneezing hit, it was every 10-15 minutes, all night long. Neither of us got much sleep. At least last night it was only every 1.5-2 hours. I hope you find a close, comfy, reasonable long-stay hotel soon, to get that to-do checked off your list. Car still here :)
    Di

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  19. Praying for you both. May you have strength and patience for the days ahead. -Art Ford

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  20. Invocation for the B's

    May D's GFR be perfect.
    May you encounter only cheery and uplifting personnel.
    May all televisions be tuned to anything but Fox News.
    And may all volume settings be LOW. (do I hear a hallelujah?)
    May all appointments be on schedule.
    And may you have continued fantastic attitudes.

    Remain. Unbeatable.

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  21. What a long day you had, and sounds like more in store. Hopefully writing about it will help you feel better.

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  22. Thanks for the details. I really appreciate reading about your experiences. I know it's a trying time for both of you. Wish you weren't so far away so I could provide some help

    Hang in there. Fox "news" is the worst! Perhaps you'll write a book about this some day. Love the photos.

    Lynda

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  23. Wow - what a day that was - at least there are some positives about Moffitt - the parking, the nice place to eat and a nurse who actually does her job well - "next contestant, David Boyd" - that's great :) A smile is worth SO MUCH when things are difficult. Definitely glad you didn't post an IV picture - I can imagine that well enough in my mind...!!! Sounds like Dad is passing all the tests - Go Dad!

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  24. Oh - AND - HAPPY SOLSTICE! I was inside because it was pushing the upper 90s here in Maryland on the solstice - tooooo hot! :(

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