Carrie comes to visit

Saturday April 28, 2012
Lithia Springs Park Site 25

 

Thursday I go for a run around the park.  After a shower and some breakfast, I finish washing Winnona.  I figure it takes me about 5 hours in total.  So I do it two hours on two days and one on the third.  First day I did the roof and the rear.  2nd day the awning side and the front.  This morning I did the driver’s side.  Makes it easier to always be doing the side not in the sun than to try to do it all at once.  I washed every inch by hand, no brushes involved except on the roof.  She looks great if I do say so myself.

 

 

In the afternoon, we pick Carrie up at the Tampa airport.  She’s a clever girl who managed to get herself a direct 2.5 hour flight from Baltimore with no stops.  When I think how long it takes us to go from Tampa to Virginia that seems amazing!

 

We are thrilled to have her here. We take a walk around the park so she can count the speed bumps of course, but also see the spring and meet the resident heron.

 

 

 

We stop by the playground on our way back.  Never pass up a chance to swing!

 

David does some playing too.  He’s always wondered what it would be like to be able to grow his hair long.

 

 

 

On Friday David goes off for his last Velcade shot for 10 days.  Dexamethazone goes with the shot so he feels fine on Friday and Saturday. 

Carrie and I go for a paddle on the Alafia River.  It rained at the end of last week so the river is not quite as low as the last time I was on it but it still requires attention in order to avoid getting grounded.

There is a lot of wildlife on the river today but only one other canoe.  Pretty sweet.   It’s an easy paddle on the way up except for the small  rapids where the river tries very hard to turn us around and send us back down stream.  Hard to paddle strongly and deeply when the river is so shallow. 

 

 

Love the hidden designs that we seldom get to see.

 

 

This hawk was swooping up and down the river nearly all
the time we were out.   We were able to catch these two shots of him.
What a majestic bird.

 

 

 

 

 

We turned around just after seeing this fellow sunning in the middle of the river.
You can see how close I am.  That’s my blue boat in the corner.

 

 

 

 

 

 

 

Here’s what happens when you have your eye on the camera trying to get a picture of the ibis flying.  Oopps!

 

 

 

 

But mostly floating back down stream is pretty easy.

 

We stop at the two points were the two spring runs join the
river to see the clear colored spring waters meet the
tannin colored river.

 

 

 

Then it’s back to the dock where we reassemble the carts, get the boats on and push them back to site 25.

 

 

On Saturday we have a scrambled breakfast that is gone before I think to get a pictures.  Then we head out of the park to avoid the week-end throngs and drive over to Largo and visit my 91 year old father and Carrie’s only living grand parent.   It takes about 45 minutes and the traffic is mercifully light - also a function of going on Saturday I think.

We try to take him to the bank which he assures me is open, but it’s not.  We try to take him to the jeweler’s to get his watch band repaired but both the people who can do repairs (ie are not sales people) who are usually available on Saturday are off today.   So far score Zero. 

But they can put a watch battery in his other watch.  So they do, he pays and it’s off to another jeweler and success with the watch band repair.

After all that work, it’s time for lunch.  Grandfather’s favorite restaurant in Largo is The Farmer’s Kitchen where the food is comfort, the prices low, the portions large and the on line ratings high.  Mmmmm good and every one of us ate too much.  No wonder we don’t do this often.

 

I always say, never go to the grocery store when you are hungry so going after a visit to Farmer’s Kitchen takes care of that problem.  Even with Macular degeneration, Grandfather can whiz through his local grocery store and pick out all the things he normally gets.

 

We bring all the groceries back, get them put away and it’s time to head home.  Before we leave, David gets a picture of the 3 generations of the Lloyd family.  Yes I am Sherry Lloyd Boyd.  No wise cracks or laughing allowed.

 

After we return to Winnona, we load the bikes and kayaks back on the car, bring in the awning, take up the patio mat and do some of the other take down in preparation for leaving tomorrow.  We’ve completed our two weeks near Brandon and are off for a week of “vacation”.

 

Neither Carrie nor I think at all about eating dinner.  But we are trying to put weight on David so he has some leftovers.  While I put together this blog post, he and Carrie each have a beer and sit around playing an ancient computer game called Captain Comic which was one we played back in 1988 when Carrie was but a tyke.  Still a great game! 

 

 

It’s off to Oscar Scherer State Park tomorrow and some Gulf of Mexico beach time.

Plea to the Anonymous and Gratitude to the Generous

Wednesday April 25, 2012
Lithia Springs Park  Site 24

 

It was only 48 degrees out this morning.

Got up to a nice brisk morning yesterday too which made for a nice run around the park.  It’s much easier running in temperatures in the upper 40’s or in the 50’s.

 

 

I do some yoga while David is gone getting the 3rd of 4 in this round of treatment shots.

 

 

 

We then drive into Tampa for another medical appointment this time with a urologist.  I won’t go into the details but it results in yet another prescription, which of course requires another trip to the local Walgreen’s pharmacy.  We are definitely helping the local economy.   Keeping track of what meds to take when has become a full time occupation.  I’m afraid to count the bottles of pills around here.

 

We are back by 3:00 and since it is an increased energy day, we take advantage.

 

Tuesday’s treatment includes dexamethazone, a steroid which gives David a few days of feeling good with plenty of energy.  So we decide to do some cleaning.  Probably not a good idea for him to be up on the roof giving Winnona a bath given his meds so I do that.

 

 

David uses our wonderful Bissell Little Green to clean the carpets and some places on the upholstery.

 

 

 

While I’m on the roof, I find some things that concern me. 

If anyone has any suggestions on how to deal with these, I hope you’ll share.

First our year old white main slide topper has these on it which my washing with a stiff bristled brush will not remove.

 

and secondly I find several spots like this on the fiberglass roof.

 

Despite these concerns, things inside and out are looking much better.  So here is the reward for our labors.
I do love pasta!

 

 

 

Wednesday is FINALLY, a day with NO appointments.

Since we got a late start on these projects on Tuesday due to the two medical appointments, we finish them up on today because we don’t HAVE to go anywhere.  Well David finishes his.  I got the roof finished yesterday and today finish 3 of Winnona’s 4 sides.   We are picking Carrie up at the airport tomorrow afternoon to spend a week with us
(WHOOPEE)
so I don’t know if I’ll get that 4th side done before then or not.

 

 

Because the sun was in the wrong spot when I got around to side 4, I was able to spend a little time with a book in this position later in the day.

And now for what’s really on my mind.

 

I’ve gotten some wonderful comments from folks who sign in as anonymous.

This is fine although sometimes they don’t sign their names at the end of the comment.  Then I don’t know who to thank.  If this is you, I hope next time you will let me know who you are by signing in using the name/url choice and just leaving the URL blank.   You can put in your name and it will come up at the beginning instead of the word Anonymous.   If you like Anonymous,  that’s ok too but I’d really like to know who you are so please sign your comment.

 

I am just in awe of the people who have volunteered to be donors for David. 

This includes not only members of his family but our blog friends as well.  This is so amazingly generous of you all.  But he will not need a donor.  The Bone Marrow Transplant he will have is called an Autologous stem cell transplant details at this link for those interested.  In brief, after the current targeted chemo therapy he is doing in repeated series gets his myeloma numbers down to undetectable, they will take out his own stem cells from his bone marrow and freeze them.   Then they will destroy everything with  Melphalan, an extremely strong chemotherapy drug,  and put the stem cells back in.  The idea is that the myeloma cells will be destroyed and the new blood cells created will be able to fight off any residual disease at least for a few years.  The donor stem cell transplant has proven to be too risky with your own immune system trying to fight off the foreign cells, an autoimmune  rejection response, which is quite dangerous and difficult to deal with. 

 

We can never thank you enough for your generosity and continuous care and support!  What a great community this is!!

Days go by

Monday April 23, 2012
Lithia Springs Park Site 25

 

Thursday we went to the Moffitt Cancer Center for a meeting with the Bone Marrow Transplant team who explained the procedure and its time lines.  Looks like we will be unable to move from here until 3 months after the procedure which isn’t likely to happen until mid to late summer. The whole thing is quite complicated and very intense.  Each patient is different and so the time lines and outcomes are only estimates.  Sounded very scary but there are an amazing number of people with this disease and pretty much all of them do it.

 

Over the week-end we laid low.  Mostly doing things like this in our anti gravity chairs.  Some of us with our eyes open and looking at the pages of a book and others of us with our eyes looking at the inside of our eyelids.

 

 

 

We also did various versions of this.

 

 

Saturday night we had a big rainstorm. There were tornado warnings and we had some winds but nothing even strong enough to shake the awning.  As you can see, we are surrounded by woods so that may have helped.   And we are about 20 miles east of Tampa Bay rather than on or near the water.  In any case, I went to sleep to the sound of rain on the roof on Saturday night and not the party noises of the warriors.  Well done Mother Nature!

 

Most the rain soaked week-end warriors left on Sunday, all except the two pick up trucks, tent, large pit bull dog and boom box in the site next to us.  But that gives me all the more reason to go down by the river to sit and read.  I’m out of ear range of the music and almost of the dog.

 

Like yesterday, today was another cool after the storm day.  We woke to 52 degrees and the warmest it got was 74.  But it felt colder since we were gone all day at the Moffitt Cancer Center to talk to a Neurosurgeon about David’s back pain.  Each time we’ve been there, it has been cold inside which I really don’t get because many of the patients are very thin and don’t have any insulation to keep them warm.  You’d think a hospital would be warm.  But I digress……

Usually if you talk to a surgeon, you pretty much expect him to recommend surgery.  But this one did not.  He is the head of Neurosurgery at Moffitt and he said the back pain is not due to the bulging discs since the disc is on the left side of the back and the pain on the right.   This appears to be a flare up of a long ago racquetball injury and the degeneration in the spine caused over time by it.   The chemo drugs often cause neuropathy and this may well be related to that.  The drugs cause the nerves to be much more sensitive and combined with weight loss and muscle tone loss the spinal column is not holding like it had been.  So the possible solutions are, see a rheumatologist for more information about maintenance and management options, steroid injections being another one of those, long term yoga and physical therapy.  It MAY resolve after all this is over when he’s able to regain strength and weight but for now he’s trying yet a different pain medication.   When all this is over, looks like it is going to be a long time from now.

 

BUT at least no surgery and that’s a big plus!

 

More doctors tomorrow.  Not really what we had pictured when we planned our full timing life.  But you never know and there are no guarantees.  Thanks so much for staying  with us on this detour.

Easy Wednesday

Wednesday April 18, 2012
Site 25 Lithia Springs

 

Just after sun up, this morning, I take my beach chair and head down the barely visible path that I discover goes from the back of the site, opposite the fire ring, down to the river.

 

 

 

The path opens up in places as I walk. It is a quiet morning.  No one  is up yet.  The temperature is cool and light.  I feel as though I might be all alone in the world.  The path, as paths do, draws me on even though I know what is around the next curve.  Still I feel like an explorer.

 

 

 

 

 

 

I come to the river, climb down the bank from the trail and sit right next to the water. 

 

 

 

 

A few birds call, I feel a gentle breeze.  A truck’s back up beep beep carries a long way.  It sounds in the far distance and then thankfully is gone.  The trees are perfectly reflected in the river’s dark water until a fish barely breaks the surface creating concentric circle rings expanding outward. 

 

 

 

 

 

Thin cirrus clouds lightly float over a soft blue sky.  The live oaks and cypress lining the river banks look stately dressed in spanish moss which waves gently in the breeze.  All this against the blue, blue sky.

 

 

The river moves ever so slowly on its long way to Tampa Bay.  A loud splash breaks the silence and I jump.  A mullet.  He jumps again and again.  Big circles ripple the water.  I wish I’d had my camera out.  I might have gotten his second or third jump.  But then, I think…. I wouldn’t have “seen” it, only through the lens.  Only the picture of it and I’m glad I'm sitting here in the quiet watching and waiting.

It’s a great way to start the day.  Now I wish I’d come out before dawn.   The water is low and there is a fallen cyprus right in front of my chair.  Looks like the perfect place for sunning turtles.  If I could just sit here quietly all day, would they come?

 

 

I do sit quietly and wonder what’s beyond the thick undergrowth on the river’s opposite side.  How did John Muir walk through this impenetrable habitat on his 1000 Mile Walk to the Gulf from Indiana to just north of where I am today.  He came in the earliest years of the 20th century when much of this area was sparsely settled.    I’ve read his book several times and recently read it aloud to David.  We marveled at the beauty of the language and the strength of character and determination it took to make such a trip all on foot.

 

 

These quiet mornings on my off running days give me a very different start to my day.  But I’ve been here quite a while and now I’m hungry.  Maybe pancakes for breakfast. 

 

I walk back the path slowly, enjoying the very first glimpse of Winnona through the trees.  This has been an excellent morning.

 

 

 

In the  afternoon, as things heat up, we bike over to the spring. It makes me smile, it’s lovely. I like to go first over to the more natural end for a while.  There are a lot of fish.  They nibble toes and fingers.

 

 

 

 

 

Today is midweek.  The swimmers numbers will start picking up tomorrow.   We don’t have the spring to ourselves as we might have had we come out before noon but there are only a few of us and we are all enjoying the water.  The spring waters always stun me with their clarity.

 

 

 

 

 

More doctor appointments tomorrow. 
But today is a lovely Easy Wednesday.