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

Henry David Thoreau

Transplant Date

Wednesday May 30 through Saturday June 2, 2011
Lithia Springs Park site 40
Lithia, Florida

 

I know my posts have been as much as a week behind and I can’t really explain that since I have plenty of “waiting” time on my hands and your comments give me something to look forward to.  Chalk it up to lethargy I guess.  Maybe it’s heat induced.  But this post should catch up to within two days of the present where there’s really not much going on. 

 

 

Sand Hill Cranes at Walgreens 001A

Wednesday

David is still feeling pretty good with the remainder of yesterday’s Dexamethazone. 

And now I have a problem.  Those of you wonderful folks who have been following my blog a while now will remember that I had terrible light sensitivity problems when in the desert southwest last year.   When we were back in Virginia at the end of the year, I had an eye appointment where the doctor found a minor infection which he said seemed to be clearing up but gave me eye drops to help it along.  Somehow he was unaware that they had some sulfa drug in them and I’m allergic to it so it made the condition much worse.  I stopped taking them immediately and hoped the condition would clear up. 

 

Sand Hill Cranes at Walgreens 002A

I haven’t had any trouble with it until this past week.  I’ve been in Florida now since January and this last week at Oscar Scherer the condition flared up again on multiple days in the sunshine and in the grocery store where there were glaring florescent lights.  My eyes burned, watered profusely and I had a very difficult time opening my eyes at all in bright light.  This posed some problems if I was alone and needed to read food labels or drive home.  I had to sit in the car in as much darkness as I could create to help calm my eyes down.  When I returned home cold compresses and no lights on helped them return to “normal”.

 

 

 

Sand Hill Cranes at Walgreens 003A 

So even though it isn’t bothering me at the moment today,  I again go to an eye doctor who doesn’t see anything serious.  He tells me he thinks I have Blepharitis which is an eyelid inflammation.   But I don’t have what seems to me to be a major symptom of that condition.  I looked it up on line and they have some detailed suggestions.  I’ll try his recommendation and their suggestions and see what happens.  But I don’t think this is the correct diagnosis.

We seem to have fallen into a medical black hole.  Aren’t we really too young for that???

 

 

Sand Hill Cranes at Walgreens 004A

Thursday

I go out running as the sun comes up but it’s 72 degrees even then and soon the heat and humidity have the sweat pouring off of me.  I’m spent when I return and use the outside hose to just cool myself off and rinse off the perspiration.  Feel much better.

After breakfast, we get a response back from a wonderful nurse at Moffitt setting June 18th as the date for beginning three days of work up to see if David will physically qualify for the Stem Cell Transplant.   If all his organs seem strong enough then his stem cells will be collected on the 11th for the transplant on July 16.  More good news when he looks on line at his numbers from the last blood draw and the M-Spike is down from 0.3 to 0.2.  This is good.  We are so relieved to see it moving again.  If he could get to 0.1 or the GOLDEN 0.0 by July the 11th, that would be fabulous but he does have to go off all the medications a month before the transplant so we’ll probably have to hold our breath and hope the numbers don’t start going back up in that time. 0.2 is definitely a highlight for today!!

I spend most of the day working on the housing problem of finding somewhere for Winnona to be where she doesn’t have to be moved for two months and from which I can come and go during the weeks of hospital stay.

 

 

Sand Hill Cranes at Walgreens 005A

 

Friday

I wake to the sound of rain on the roof which makes it very hard to want to do anything but curl up and enjoy it.

When it stops, we get more phone calls from Moffitt with details about the gigantic number of medical appointments necessary to get approval for this transplant.  Looks like we MAY be able to have one more “vacation” week and then that’s it.  We move into full scale daily visits to Moffitt.  David has to schedule a dentist appointment somewhere in all this to obtain a dental clearance letter certifying that you need no dental work done.  Long story why.  You don’t want to hear it.

It starts pouring rain and from the dinette we watch the beauty as it pours into the thirsty ground and into the river.

 

 Sand Hill Cranes at Walgreens 007C

 

David takes his second Dex of this week and later in the morning it’s another trip to Florida Cancer Specialists for the 2nd Velcade shot.  Only two more to go next week and then the treatment phase is finished. Hopefully we’ll get the regular “vacation” beginning on June 10 and then it’s on to transplant work up, work down, and work out beginning on June 18.

I DO NOT recommend this as a way to spend your retirement or your full timing life.

 

Sand Hill Cranes at Walgreens 008A

 

After the velcade shot, we head over to Brandon’s Good Will to find some gently used clothing that won’t make him look like he’s swimming in it.  Then it’s off to the grocery and the pharmacy to have yet more prescriptions filled.  Approaching the pharmacy we are shocked to see a family of 4 Sand Hill Cranes cross the busy road and wander onto the grass where they hang out for nearly an hour.  What a hoot to take their pictures with the Walgreens sign in the background.   The rain make the pictures difficult and washed out but it sure is fun to see the family of cranes and walk around in the rain taking their pictures.  Color that a bright spot for today!!

Rained all day long so this was a good day for errands.  I know the plants, the river, the spring and all of us are loving this rain.

 

 

Sand Hill Cranes at Walgreens 010A

 

Saturday

The warriors have come in for the week-end but not so many probably because of the rain all day and night yesterday.  Or perhaps because they have not yet recovered from the Memorial Day bash.

However there’s only one camper that matters.  Yesterday we again started having low voltage electric problems in site 40.  It seems to have to do with whether or not someone is in site 39.  If they are, we have problems, if they are not, we do not.  The park honchos again offer to let us move to another site which we have no desire to do.  Why they can’t find the problem and fix it?  Who knows.  But we are hoping that the rig in #39 will  leave tomorrow so we’ll just put up with it.  Thank goodness for our Progressive Industries protection.  I cannot recommend it highly enough. 

I spend the morning consolidating the list of RV Parks within 30 minutes or so of Moffitt.  I find 4 that might work, I check their websites, David calls them, I map out directions and we spend the afternoon driving all around Tampa to take a look. 

 

Sand Hill Cranes at Walgreens 009A

The first two are the closest at less than 10 miles from the Cancer Center but they are just so depressing and run down that I can’t possibly do it.  And the prices aren’t that much better than the other two.  Thank goodness for the “specials” during July and August when no one in their right mind, thinks me, would want to spend two months in Tampa.

 

The one I like the best is of course the furthest away but only 17 miles.  We go to Moffitt and then drive to the park to see how long those 17 miles will take.   The answer is that on a week-end day of significantly lessened traffic it took 45 minutes to drive since the only route between the two goes totally through Tampa and has an endless line of traffic lights.  No way to take an expressway or freeway which I usually don’t like but in this case, with daily hospital visits, would be preferable.  I suspect it would take at least half again as much time during the work week.  Amazing how long it takes to go 17 miles.

 

So I suspect, unless something new pops up within the next couple of weeks which is in close proximity of I 75, the easiest road to take to Moffitt, I will be hanging out at Quail Run in Wesley Chapel, Florida for part of June, all of July and a good bit of August.  It too is 17 miles away but most of that is on I 75 so it only takes about 25 minutes even in traffic.

Wish I’d taken some pictures of these parks but it was so hot today 92 that I felt totally drained and hardly got out of the car.   The one here of the entry gates is from Quail Run’s web page.

 

quail run

 

I know that none of these is going to feel like “home” to me.   They are just not what I enjoy when I’m at a campground but I have to be somewhere for 2 months.  They were all surprisingly full.  But some sites seemed like permanent or semi-permanent residents with wooden decks and storage buildings although many residents were clearly gone from “home”.  I just keep wondering why since  they have wheels would they pick these places on the outskirts of Tampa to use as even a snowbird escape. 

Got home too hungry to make dinner so we had left over pasta and then after being fortified made up some banana blueberry ice cream for dessert.   We were able to sit out on the patio and enjoy the decreasing evening temperatures which turned out to be today’s highlight.

28 comments:

  1. Heat induced lethargy? Yeah, I hear ya! 95, 96 degrees here in Spring, TX almost every day with bad humidity. Don't feel like going anywhere or doing anything! That baby shows no signs of getting ready to make a grand entrance yet. We will keep praying for the magic numbers for David! Quail Run looks decent but know what you mean about it not feeling like home. If you are going to have to stay a long time, you need to have the most positive atmosphere around you you can muster! Hope the eyes are feeling better...

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  2. Love all the pics of the cranes! Also love the number drop for David. Sorry to hear about your eyes. Pay attention to them because they are the only ones you get. (not to mention they are strikingly blue). Hopefully you'll have some shade on your long term site. It sure gets hot in FL.
    Syl

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  3. you can send some of your heat here to us...Sherry...it was only 50F today :(....So sorry to hear about your eyes...like you don't have enough to deal with...happy to see the M-Spike is down to 0.2 yeah its moving...I love the sand hill cranes they were in most of our winter parks in Fl...I find they are so peaceful and regal..and they never seem to rush just amble along..fingers crossed and tons of prayers to you and David as you journey onto the transplant date...Quail Run does look like a fairly nice park..maybe you will meet some fantastic folks there...take care

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  4. So glad you found a place to stay even though it is not surrounded by nature which you like. It is only about 30-40 minutes from my house and if Karen comes back to her RV spot she will be near also .. Ken goes to the Va hospital near Moffit so if you need anything we are a phone call away. Hope David numbers go down this treatment . Take care!

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  5. Maybe Quail Run at least has a pool to soak in? Hope so.

    I see that the young colts are almost as big as their parents. Cool.

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  6. People drive all over the country to get somewhere to see sandhill cranes. Turns out, you just need to go to Walgreen's. This is an important datum for birders.

    Pool? Say they have a pool!

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  7. Thanks for getting us up to date! So glad to see David's numbers moving in the right direction. Love the Crane photos...what a hoot:o))

    We really know how you hate to be in a "Regular" RV park, but in the long run you will be glad you are as close a possible. We are just glad to hear you are getting closer to the transplant. We also know this is no way to spend your retirement, but you two have taught so many of us so many valuable lessons as we follow your journey. Wish we could do more than send positive thoughts and hugs your way. We miss you guys!!

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  8. I am nearly blind in a grocery store, Target, or anyplace that has those bright overhead lights. I thought it was just a result of my cornea transplants, so I'm interested in the fact that you have the same trouble. I don't know why they need those glaring lights anyway. Maybe if you find yourself in an RV park that wouldn't be of your choosing, a serendipitous event will make you glad. I hope so!

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  9. Glad to see David's numbers go down. Fingers crossed they continue.

    I was glad and relieved that you found a park to stay in. Remember, it's only a couple months out of your life and we can all put up with something for a couple months. You will be glad you chose to stay close to David. You'll probably be with him more than you are at the park anyhow.

    You didn't say if your eyes improved as the days went on. I sure hope so. Do you think it could be an allergy? Just wondering out loud...

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  10. Good news that the all-important # has budged a little, and in the right direction. Having a date for the transplant is a step in the right direction of getting some of those unknowns answered; now to get through the appointments that will fill your days ahead.

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  11. The pictures of the cranes are wonderful! Who would've thunk that Walgreen's was the place to go?

    It's good to know that you do have a possible transplant date, and that David's numbers have moved in the right direction. Hope there is a nice pool at Quail Run. Hope your eyes are better. I mean, the load you are carrying is reminding me of a man named Job.

    Meanwhile, you continue to shine in the midst of all the trouble. A real gift to the rest of us. I wonder if everyone here hasn't discovered---as I have---that our own troubles have diminished greatly? The worries I thought I had have all but disappeared!

    You know that we are all sending our very best wishes your way.

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  12. how about checking out some of the hotels that are extended stay... you could park the RV in the parking lot and still have access to all your stuff and no lease is involved...

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  13. Great crane Photos !!! Wishing you both better health in the near future !

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  14. Hmm..the cranes seem to be a sign of something. Not sure what yet :) Glad David's numbers are getting closer to the magic 0.0!

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  15. Glad that you found a place to stay even if it's not exactly what you'd like. I'm sure that you'll find something interesting there about which to blog. Your observations of human behavior are as interesting as your nature pictures! Nothing too exciting to report from here. Lots of lightening bugs in the yard last night. I love them!

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  16. You guys are in my thoughts. Sending positive, healing vibes your way.

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  17. Sherry, hoping for 0.0 as everyone is. I know what it is to feel "cheated"--depressing doesn't nearly describe the feeling. I'm hoping that when David recovers from the transplant that you can enjoy your dream and a wonderful retirement. You have each other. Hold on to that thought. In the meantime, you have a long road ahead. I hope that you'll have some family or friends with you to help or just for company.

    I was not afraid of surgery when Rich was here, but I get anxiety thinking of recuperation without him so I keep putting off back surgery. Thank goodness David has you. You seem to draw on each other's strength, and I'm glad that he has you to stand by him during these very difficult times.

    Just be sure to realize the toll it's taking on you. Could it be stress or allergies that are causing your eye problems? Read down a ways about neck muscles.
    http://answers.yahoo.com/question/index?qid=20110213121155AAvS12L

    Glad you keep writing. You need the outlet and it's good to know how you are doing. Just so frustrating not being able to help you.

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  18. We had spoken to some folks from Quail Run about workamping when we were at the Tampa RV show. Seemed like nice folks. It's not the ideal location for you normally, but this is a special circumstance and beats a run down icky place for sure. Hang in there and know you have many folks in your corner.

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  19. I know you are not a fan of the "RV resort" but it will be a better place for all you have to go through right now. No- moving -no going to the dump station. We have met lots of nice people at the resorts and it seems they usually keep coming back because they like the other people and the sense of community. It looks like a nice park and hopefully you will be able to stay in your home.
    Like Nancy, I wish we could do more to help. We were so glad to hear David's numbers moved. Our thoughts are with you.

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  20. Glad to see that the number is down a notch! Good news indeed. Very cool cranes.
    Yep - take care of your eyes. Being sensitive to sun while in FL must be quite frustrating. Hold your head up high (as I know you will!) and you'll get this latest hurdle behind you.

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  21. Thanks for getting us all caught up! I absolutely love the crane pics in front of the walgreens sign :) Thinking of you both always!

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  22. Good grief -- just one more punch you don't need. I hope you soon find the solution to your eye problem.

    Wonderful news on David's numbers! Will still pray that it continues to go down. Like Catherine and JoBeth mentioned, we've also met some really nice people at the parks we've stayed at long-term. The sense of community could be a good thing for you right now.

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  23. Sometimes a nice, plush, squishy RV Resort is just the right thing. Very cool crane sightings.

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  24. It seems like good news to have a date in mind for David's potential transplant. That at least feels like you are moving forward. I suppose you could look at it like your "due" date. You know a big change is coming but you don't know exactly what to expect. I look at the blog every day and you are both in my thoughts and prayers as you move forward. Judy Weltman

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  25. I'm guessing that if he needed dental work that could release bacteria in the mouth, creating infections in the body. Better to be safe than sorry. I am pleased that you have found a place within "reasonable" driving time to the hospital. My 45 minute drives became tiresome. I sure hope you get some relief for your eyes! Hugs to you....

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  26. Numbers going down - good news!! Love the crane pictures - if I were the cranes, however, I would find a prettier locale than outside the Walgreens...!

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  27. Such good news to see the M-Spike number inching downward for David. Must have been such a spirit lifter for both of you. Now, to get those eyes working properly... then on to the next challenges. I imagine David is looking forward to being off these potent drugs for a while - hoping to regain strength and weight, then on to the chapter you have both waited for, the transplant. Glad you have located a place for Winnona within close proximity to the hospital. I am watching my little birds at the feeder as I type this, don't know what they all are... I know the cardinals and the finches.... We take the bird feeders in every night to prevent the bear from pulling down the feeders. I keep a little fountain running close to the feeders and I have seen the humming bird trying to drink from it. We have humming bird feeders but the bear doesn't seem interested in those. I would imagine you had bears in Charlottesville? Always sending prayers for strength and courage for both of you.

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  28. I spent a summer in Tampa once going to the university there. It was SO hot and muggy, but the lightning was fantastic (scary).

    I really hope all the health problems get better. It's such a drain on a person, both physically and mentally, to be dealing with such, and being the caretaker is really hard. Best of luck.

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