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

Henry David Thoreau

STILL raining

Thursday June 7, 2012
Lithia Springs Park Site 40
Lithia, Florida

Note: if you mouse over the pictures there are “remarks”

Surprise, more rain!

 

The spring is on the rise

 

Yesterday, Tuesday, Karen of Travels with Karen and Al commented that in Florida in the summer, the forecast is always rain.  (Now that’s comforting) She says that “it’s the rainy season  (yes indeedy)   and you normally get some rain just about every day – just not all day like this week has been”.  ( All rain, all day every day is how it’s shaping up.)  

 

They look wet, but happy about it

 

Catherine and Jo Beth, of RV Crazy Travel Journal,  who also have lived in Florida, comment that hopefully you are” just getting into the summer rain pattern of afternoon showers”.   My 92 year old father, who has lived in nearby Largo for 30 years says the same….afternoon showers.  (I sure hope so. And soon)  But he qualifies with “however nothing about the weather seems to be what it used to be”. Ah sadly yes, thanks Dad.

 

 

There are lots of repercussions of rain, rain, rain for us.

a young great blue?? 

I’m sure hoping that it is soon going to settle into what these folks have come to think of as the “regular routine”.  I can handle that if there is just at least some time for things to dry out.  Some time to be outside.  For the last week, everything is wet inside and out and it isn’t raining inside the coach “yet”.  Books are damp, the printer won’t pull the paper because the paper is too wet.  Bath towels are not drying and mildew is just around the corner.  The clothes I wore out running yesterday are wetter than they were when I returned and hung them up in the bathroom.  But we can’t run the AC 24/7 for the dehumidifying effects or we’ll freeze ourselves out.  Especially David with no meat on his bones.  I’m thinking I should have brought that stand alone dehumidifier we USED to have.  Be CAREFUL what you think you won’t need when you give up your “things”.

 

Love my dinette view

So this morning I can’t sit down by the water.  It’s raining.  I can’t do yoga outside.  It’s raining and even the patio mat and furniture are soaked.  But at least as I sit inside working, I can look at the rain falling into the river below me.  The drops are on the window edge, on the leaves, falling into the water.  The land is loving this rain even if I am not so much.

 

We both try to figure out how to work around this constant rain.

He doesn't even look wet 
David needs to go for a walk every day but that’s tough with all the rain.  There are breaks but when you set out, you never know if 5 minutes later it’s going to pour.  He needs the exercise for his bones but not too much exercise lest he lose any more weight.  It’s a fine line that we aren’t sure he is walking correctly.   But this morning he takes the camera and gets the shots that are the main photos on this post.

 

 

no good up on the roof

 

While it continues to rain, I do some research on the chores that are piling up.  I’ve still got these spots on the fiberglass roof and they are really worrying me now with all this rain.  So I’m trying to figure out how to do something about them even if it won’t stop raining.  Can’t get up there and sand them down and do whatever I should to reseal them (all detailed directions or advice on how to do something is welcome here).  Can’t call a mobile tech, same rain problem, and there’s only one listed in RV Service Reviews for the Tampa area and the reviews for him were not good.  We are near enough to Lazy Days and we have several friends who have purchased their Class A’s from them and been very satisfied with the way they were treated.  BUT there are more than 20 reviews on RV Service Reviews which say exactly the opposite.  High hourly rate, poor service, would never use them again.   SIGH!  Research time spent with no result.  

 

empty campground

 

On to tires for Ruby. 

Ruby’s front passenger tire has had a slow leak for some time.  Actually a LONG time but David’s decision was just to keep topping it up with air.  My decision is that the front tires need replacing so I go on line to Tire Rack and spend eye glazing hours looking at the tires for this make and model of car.  Comparing this one to that one, reading all the reviews and the summaries.  I think I’ve decided what to buy and I think I’ve decided where to have them shipped for mounting and balancing.  Now the problem is when.  We have to leave Lithia on Sunday, our two weeks are up.  We have to go “somewhere” in the rain for at least a week before we can come back for our last 2 week stay here before moving to Quail Run.  Those two weeks are rapidly filling up with the pre transplant screening doctor’s appointments.  You don’t even want to hear about all of those.  I think I’ve counted 10 in 4 days.  But at least I know what I want to do about the tires.  That’s some progress.  How could I possibly do this without the internet?

 

After my progress/no progress, I realize it’s time to drive to Brandon.

 

Campbell's Dairyland from the 60's

 

Having driven this 10 mile route so many times since it is where David has his shots done on Tuesdays and Fridays, I think I can drive it in my sleep.  His Revlimid prescription was SUPPOSED to be delivered to the clinic Tuesday so he could pick it up at his regular appointment.  RXtoGO, the Pharmacy which provides this chemo drug, is SUPPOSED to do this each month.   For the past THREE they have not been able to manage to get it there on time and once again I have to make a special trip to pick it up.  What in the world would happen if we were on the road, in a different place each month I wonder???

 

they serve other food too

Of course I could only drive this in my sleep if it weren’t raining.  HA! Rain, my favorite driving condition.  Oh no actually my second favorite, snow is my most favorite. Guess I can be thankful it’s only rain.  At least I know these roads so well well that when it starts coming down in sheets, it’s not quite as nerve wracking as it might be otherwise.

 

 

 

I must confess, I have an ulterior motive.

 

the Thursday special

 

After picking up the medication I turn left out of the parking lot, go two blocks and pull  into Campbell’s Dairyland.  I actually volunteered for this Revlimid run because Dairyland has a “special” every day and Thursday’s is the Reece’s Sundae.  Normally $5.50. 

 

 

 

 

Mmmm Good!!

 

I can’t believe that in 4 months I have never been here on a Thursday?  I’m calling it a late lunch and it’s big enough to as a meal.  Are you getting the sense that the ice cream intake for yours truly seems to be going up steadily??

 

 

 

 

Inside Dairyland-my current version of Disneyland

 

After I finish my sugar feast, I make another less fun stop, in the rain, to pick up some over the counter medications that David is prescribed to help with the side effects of the chemo drugs.  The category “medicine” in my monthly financial records is growing by leaps and bounds.

 

Still no break in the rain.  We haven’t even put the table cloth on the picnic table since it doesn’t stop raining long enough to sit outside to cook or eat.  The poor grille just sits there waiting.

 

Later in the evening, David watches some of Ken Burn’s National Parks series with a big bowl of popcorn.  We continue to try to put weight on him any way we can.  But that’s tough leaving out dairy and sugar.   We have the entire Burns’ series on DVD and enjoyed watching it as we traveled out west last year and enjoy it now hoping some day we may be able to do some of it again, see places we didn’t get to. 

 

“Hope is a thing with Feathers, that perches in the soul.” **

Although in honesty it isn’t looking good for long term travels since it will be very hard for David to have the kind of follow up that this type of cancer requires and also be on the road.  It’s beginning to look like he may be forced into a home base where he can have large series of blood work done each month to check the status of the myeloma.  But we won’t know any of this for absolutely certain until we see how he comes out of the transplant.  We’re trying to imagine ways in which we could continue to full time even with the necessity of having not just a hematologist, but a Myeloma Specialist that he can see each month. 

I’ve gotten a number of encouraging reports from commenters about friends and relatives who have had successful stem cell transplants and are leading normal lives again.   Those sound very hopeful.  But unless their transplant was for this specific type of blood/plasma cancer, the situations aren’t really comparable.

 

I hold Emily close.

Too much rearch

 

We spend an increasing amount of time gathering information online from other Myeloma sufferers about their history and experience and from on line sites specifically related to Myeloma research and treatment.  We want to be aware of every option and to have our eyes open and know what to expect.  There are times when I wonder if increasing our knowledge is really wise.

32 comments:

  1. Eternabond is our go-to for anything on the roof that needs to be sealed. We get ours from Amazon where it's cheaper. It comes in rolls of different sizes - we generally get the 4" wide roll. Just make sure your roof surface is clean, cut the tape to size, remove the backing and stick it in place. Make sure it's where you want it the first time because it's industrial strength sticky. Going over it with a roller last will help the bond.

    A big plus to Eternabond is you don't have to sand down or remove caulk or anything before you put it down, it will seal around these things. It just needs a clean surface for good adhesion.

    Florida would be pretty perfect if it weren't for the humidity. Even the outside walls of The Duck started to mildew last summer, it was gross.

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    1. Oh no Annie - mildew outside on Winnona? I hadn't even thought about that. I was just worried about my towel and clothes. No wonder everyone heads out of here in April.

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  2. If you were parked next to Rich, he would help you with Ruby's tires, the roof, anything that needed done. I'm sure there are other men in the park, who if they knew your situation, would be more than happy to lend a hand. That's the way RVers are. We were in a park on the west coast, once and one of the RVers had a heart attack and they were trying to figure out how to get home because his wife was afraid to drive the motorhome. A neighbor (complete stranger) offered to let them fly home (across country) while he drove their rig back for them. I had emergency surgery while we were traveling one year, and the couple next to us knew we had a dog--that's all they knew. They told Rich not to give her a thought, they would take her in their motorhome and treat her as if she were their own own and offered to do anything they could to help. When I came "home", there were flowers on my table and a meal waiting for us. People really are incredible so don't be afraid to ask for help. I know you and David would be the FIRST to help someone in need.

    Does David have good rain gear so he can walk in the rain? Sometimes it's refreshing. Maybe too hot in Florida, huh?

    I bought a very small dehumidifier for my little trailer. I'm not sure that it actually did anything-I would find a about a cup in it. Amazon has a variety-many with mixed reviews. This one looks to be about the best. http://tinyurl.com/7wo6rwe

    Maybe if you can go outside for about 20 minutes and turn on a small electric heater on high it would help. Then go back in and turn the air on low for a bit. I know mine heats up my trailer very fast, and dries it out so that I can't stand it. Of course you can't compare my trailer to your motorhome. I'm sure it would take longer, but it might act as a dehumidifier of sorts. I'm probably preaching to the choir as you've probably already thought of all these things.

    David took some beautiful pictures for this blog. I give him credit for remaining so positive. I think it's so nice that you read aloud. Do you read to each other or is it just you who reads to David when he cooks? At any rate, it's so indicative as to what kind of couple you are, and it makes me smile.

    Fulltiming: I'm not sure how viable this is, but for a good climate albeit rainy at times, how about the Oregon Coast? The reason I say this is that you don't get snow, and when we've been there, we've hit great periods of sunshine, and there is so much to do within a days drive--even less than a days drive and you're out of the rain. There are some cancer centers up in the Portland area, too--whether they are what David needs, I don't know.

    I know I'm going on and on, but it's out of desperation that I wish I could help you. I wish Rich was here--he'd say, "Let's jump in the MH and drive down to see how we can help." You and David would have loved him.

    I am always astounded at your strength, Sherry, but I know it's because you love David so much. We, out here in blogland (and I think I can speak for everyone who reads your blog) are wishing that the transplant process was finished and that you and David were in the silver lining of the cloud.

    If the hospitals in the Atlanta area would be suitable, it's a fairly moderate climate. You could park the motorhome in my driveway and live in my house for as long as you like. I could stay at my daughter's house - she's just a mile away. I know I've said it before, but please, please--if there's a center that's suitable for David's cancer, it would be a change of scenery and a way to relax and rest in a home that could be yours. I know Crawford Long, Piedmont, and Emory are several that say they have cancer centers to treat multiple myeloma.

    I hope you get my message. Reach out to the hands that are reaching to you. RVers are like family.

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    1. Hobo I just love your helpful advice. Your comments always leave me feeling so cared about. I'm glad you are here.

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  3. Sounds like a pretty tough time. I found that it's good to research to a certain point, then it bums me out and I need to go into denial. Whatever it takes to keep your hopes up is what matters. More ice cream? Whatever it takes.

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    1. It really is all about that little thing with feathers. I so agree with you about a little denial isn't a bad thing. Thanks for this comment. I hope things are improving for you.

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  4. Can't stop the rain, but maybe it is just filling the waterways so when you finish all this cancer work...and you will finish it...you will have lots of beautiful waterways to explore. No more drought and too little water to paddle conditions. Perhaps we could meet up in the Everglades next winter.

    How about adding lots of Avocado and Peanut Butter to David's diet. Whole Foods makes a wonderful fresh ground peanut butter. Everytime Bill's weight starts to go up, it is because he is eating more peanut butter than normal;o)) We love to spread peanut butter on crisp celery for a great snack!!!

    Well, hope the rains stops and things dry out!!

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    1. Well it filled the waterways so full that the river is dangerous and the aren't renting canoes or letting people in the spring since the river backed up into it. LOL Famine or feast!

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  5. Today on my way home from the mall, I thought about you and David. I thought, "please don't let it STILL be raining!" Then, not half an hour later I find out that it IS.
    Darn it. The helplessness, not being able to do anything to make things better, is so frustrating. I hope you listen to Hobopals. Whenever possible, take people up on their offers of help. Being here for each other is always a good thing, both for the giver and the receiver. Hang in there. And, like Chinle says, go ahead and eat lots of ice cream!

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    1. Hey Rose,
      If you've got an email address send it to me at RVDreamlife@gmail.com. Not a problem eating lots of ice cream. Can I run it all off is a problem though and what sort of health issues may I be creating for myself given what they say about dairy and sugar. But I suspect if I eat enough of it, I'll get over it. Right??? :-)

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  6. Ice cream cures all ills :) Reese's on Thursday...oh my! Gotta find something like that here :)

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    1. Laurie, try googling home made ice cream and your zip code and see what comes up. It's the little places that have the cool things more than the franchises. I agree ice cream is a great cure!

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  7. On top of everything else all that rain must really be getting you down. Your dad is right about the weather. Seems like everywhere we've gone in the past year has been "unseasonably" hot, cold, or rainy.

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    1. I guess the new normal is that there isn't any normal any more. Hope you find the "just right" place soon.

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  8. It's not out in nature, but take David to the mall and walk there. It's air conditioned, non-humid, no rain falling, there's benches to sit when he get's tired and when it's all done, there's usually an ice cream shop to celebrate.
    When I was rehabbing my broken leg, I went to the mall almost every day because even in NC in July and August, it was unbearably hot to walk outside.

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    1. I read David your suggestion about the mall and he reminded me that we haven't been to a mall in 15 years or more and that the closest one is 10 miles from us. A 20 mile drive for a 30 minute walk may not be effort effective. :-) But all suggestions are more than welcome. He's OK walking in the park if he gets out early enough to beat the heat or takes an umbrella to beat the rain. He actually isn't bothered by the heat as much as I am. I remember your leg since I'd had a broken ankle and could empathize.

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  9. I'm afraid to eat ice cream now. I'm afraid it will set off the endless craving loop. A smoothie is not exactly the same thing, though.

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    1. You are really right Rox. The more ice cream I eat, the more ice cream I want. I really do have a sugar addiction. Maybe I'd better switch to home made smoothies more often. I get kind of sick of the banana taste in everything though.

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  10. Sounds like you have a plan already for the tires, but there is a Costco in Brandon that may be worth the membership for the good deal on tires. Also, have you checked Fort de Soto for sites? Since it is a county park, I don't think the state park restrictions apply and it seems like it would be lovely even in the rain.

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    1. We've never had a costco near enough to have joined and I didn't know there was one in Brandon so thanks SO much for that news. I'll check it out. Have been to Fort Desoto and it is beautiful but impossible to get a reservation for any length of time even if it wasn't $42 a night. We pay $18 here for W/E and dump station. The restrictions here are because it IS a county park like Fort Desoto (though different county) If I said State Parks in Florida restrict to 2 weeks I misspoke myself and apologize. This is what I love about comments. They give me great information and catch me when I'm wrong. Thanks!

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  11. Not sure how feasible full timing is going to be in the future given the doctor appointments. Is using the farm as a home base an option? The weather may not be as perfect as you'd like it to be there, but it would be familiar territory and one less unknown to deal with. You can go on "vacation" from there when circumstances allow. Anyway, just a thought. Stay strong.

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    1. That may be what we have to do Erin but we've been everywhere that is even remotely close enough for a "vacation" and multiple times having lived there for 30 years. Another problem is that well water is prohibited for post stem cell transplant patients and that makes the farm a real problem. Thanks so much for your thought. Keep them coming. I count on them.

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  12. Walmart and other stores sell de-humidifier "buckets" with dry granules. We've got several of them in the motorhome. They probably can't keep up with the amount of moisture that is in the air where you are, but they might help. They are refillable. You usually find them in the "closet" section at those different stores. Would running a small fan help keep the air moving to dry it out, I don't know for sure, but think it might? Fort DeSoto is expensive, but we loved it...forty bucks a day if I remember right.

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    1. Thanks Jeannie. I think we are going to break down and leave the AC on most of the time and put on warmer clothes. I agree that the graules couldn't keep up with this amount of rain. You are right on about DeSoto. $42 a night.

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  13. Increasing your knowledge is ALWAYS wise. Being psychologically prepared for anything beats oblivious any day… at least in my book.
    I’m with EE on the housing issue. Why not head back to the farm? Did you guys sell that place?
    And I’ll second Jeannie on those moisture-sucking crystals. They are fantastic. We use the Damp-Rid brand when we put the Airstream into storage mode. At least you can stick a few in closets or pantry.
    Sugar and dairy are not evil! As long as your numbers are good, and you use treats in moderation, they’ll do you no harm. Both categories are naturally created products that exist on planet Earth with no help from us. Enjoy your ice cream!
    GMO products on the other hand? Don’t get me started…

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    1. I love that commenters comment on the comments. Me too! This is so cool!! My mentor Colin Campbell thinks that dairy is evil with regard to cancer which is why I have the concern. I don't have any "numbers" to know if they are good or not. David is the only one with the numbers but luckily he isn't the one with the sweet tooth. Don't you get tired of trying to ferret out where the GMO is? I just assume that all potatoes, peanuts, soybeans and corn are GMO unless they say they aren't. What do you do??

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  14. Gail's suggestion for David to walk at the mall is excellent. My mood tends to reflect the weather conditions, so if it rains for too many days, I can get down in the dumps. If that happens to you too, you could go with David to the mall. While he's walking, you could find a bench and just people watch. Sometimes just having a change of scenery can help lift your spirits.

    I sure wish there was a place around here where I could buy a Reese's sundae. That looks awesome!

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    1. Me too on the moods and weather Terri. The only thing that would make that sundae any better would have been hard rather than soft ice cream. See my comment to Laurie on finding a home made ice cream mom & pop place. You seem to be in a great place for one of those to show up.

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  15. We squished our way everyday in Disney with all the rain. I'm busy now trying to get rid of all the mold between my toes. You'd think Florida was the rain capitol of the world.

    I agree about the Eternabond. The fiberglass roofs on the Winnebagos are thin like a piece of linoleum. Not too much to sand down, so a patch of the tape is a good fix, it will last years. Eternabond was developed to patch pipes underwater, so you wouldn't even have to wait for a sunny day. ;c)

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  16. Duh! Now I know "who is Emily"? I didn't realize that clicking on the quote would take me to the poem by Emily Dickinson. Wow. That poem does say a lot about where you are. She, also, talks of storms. Thanks for sharing that. I hope all these other people are quicker than I am, and caught that immediately!

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  17. So much constant rain is unusual. Hopefully it will settle down soon. Not so, for the heat and humidity though. I think running the air is the only option- David will have to bundle up. I am like you -I have to research everything possible. I think it helps you mentally prepare for all possibilities. However, every individual reacts a bit differently to every treatment or situation - so in the end you just have dive in and give it your best shot.

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  18. Such nice comments and many suggestions - I knew exactly what your response would be about the mall...but, if there is somewhere inside that is close, that might be a good idea - you know how Dad likes to putter around and look at things :)I'd say knowledge is good because when you come across certain situations, you will think, 'ah, this happened to someone else and they got through it' - however, emotionally, the reality is damn difficult - take it in doses - not too much at a time. I'm with 'Spotted Dog Ranch' - whatever it takes...even ice cream :) I think Pops has a talent for pictures - really like the grasshopper. xoxox

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