Trials and Tribulations of a Chronic Illness on the Road

Tuesday November 6 – Saturday November 17                                      Most Recent Posts:
Fort Clinch State Park                                                                       Being Part of a Pilgrimage
Fernandina Beach, Florida                                                       Leaving the Great Smokies and Flying Through Fall

I’ve written throuughout my blog about the shock of having been full timers for not quite two years when in January of 2012, David was diagnosed with Multiple Myeloma and about continuing our full time life despite this handicap.  There have been a lot of bumps in the road including a stem cell transplant and a heart by pass but we’re still at it.  Another smaller bump happens just before we are set to leave for Florida. 

Plans interrupted

Our reservation at Fort Clinch was for 14 days beginning on Sunday November 4th.   That meant we would leave Virginia on Friday the 2nd for North Carolina.  Saturday the 3rd in South Carolina and then we’d be checking in to Fort Clinch in Florida on Sunday.  If this seems like a ridiculously fast trip by passing wonderful things in both North and South Carolina, that’s because it is.

Sadly, because of David’s treatment schedule, we have to hurry down the interstate rather than leisurely moving through the Outerbanks to Hunting Island State Park, Crooked River and other wonderful spots along the South East Coast.

However, David’s blood numbers on Wednesday at his last treatment in Virginia show that he needs blood transfusions on both Thursday and Friday.  So I cancel the first two days of our reservation at Fort Clinch making someone very happy I’m sure and David spends Thursday and Friday mornings in the hospital.  We finally leave Virginia on Sunday instead of arriving at Fort Clinch campground on Sunday.

But it’s better late than never and we are glad to pull into our site on Tuesday and have this as our view and warmer temperatures as well.

Every winter we have come to Florida because David’s main Multiple Myeloma Specialist is here as is his diagnosing hemotologist/oncologist.  Every winter his diagnosing MD the fabulous Dr. David Wright makes it possible for us to move around the state’s wonderful State Park Campgrounds by putting in orders for David’s treatment at the closest of the Florida Cancer Specialist Infusion Center to wherever we are.   This is a lot of work for him and his staff and they have been so amazingly kind to do it for us.

This year we run into another unexpected snag.  It seems that because he hasn’t actually been seen by Dr. Wright since April and doesn’t have another appointment with him until January when we will be on the west coast near his office in Tampa, the Fernandina Beach office will not administer his infusion on Wednesday.

Only seeing Doctor Wright in April and January has been the fact for the past 7 years and it’s never been a problem until the folks at the Fleming Island clinic will not give him the infusion he needs until he sees Dr. Wright. 

Plans Interrupted

SO we drive 250 miles across the state from Fernandina Beach Florida to Tampa for that appointment and David gets his infusion at that clinic.   The picture above is what it looks like when you are eating your lunch while getting an infusion in a cancer clinic. 

We’re not very happy about all of this and when we see Dr. Wright, he isn’t either and is having “words” with the other clinic.  We’ve just driven 630 miles over 3 days on Sunday, Monday and Tuesday to get to Florida and then on Wednesday morning we get up and drive Ruby 250 miles to the other side of the state and spend the night in a hotel to see Dr. Wright on Thursday.   This also means that all of David’s weekly appointments will have to be changed from Wednesdays to Thursday.  Dr. Wright said it was fine to have just 6 days between infusions but the insurance company said no, it has to be 7.  Since when are they the medical experts.  Just don’t get me started.   

Plans changed.
All appointments will have to be rescheduled.
Thanks to corporate insurance over ruling the expert doctor.

One bright spot - On our way out of the clinic we see this great old photograph on the wall.   Now those were the days weren’t they?

A little closer up.  I guess this would be car camping not actually RVing.  David thinks these would be late 20’s or early 30’s.  Any car experts out there know for suure?

On our 250 mile return trip we have to put up with trucks and road work but get a nice rainbow for our efforts.  My camera is in the back seat so David uses my phone to get this picture but can’t get the full rainbow which is enormous and goes all the way across the sky. 

The following photographs are a collection of those I took over our 12 days at Fort Clinch.  Some are from cloudy days, some from blue sky days.  They are all interspersed.

On Friday and nearly every subsequent day,  I take the boardwalk from the campground up and over the dunes and out to the beach.

The sea oats make a beautiful doorway to the water.  This is not actually the ocean.  This is the Amelia River.   I turn east with the river on my left toward the ocean and the river’s mouth.

The river is beautiful, its waves more calm than on the Atlantic.

Love those oats.  So glad they are protected now and it is illegal to pick them.  They are vital in stabalizing the dunes and protecting from floods.

I’m headed toward the ocean with the river on my left.  The rocks just visible in the water are quite large and are what remains of the spot where there once was a fishing pier before a hurricane took it away.  I’m not sure why it was never replaced.   This is a long line of rocks and at low tide you can walk out beyond them and see the barnacles on them.

Among my finds on the beach were lots of shells of course mostly oysters and scallops

I also find a number of horseshoe crab shells. I’m not sure if that makes me happy or sad.  Happy that there are some still around and we haven’t bled them all to death but sad that the only things I see are their empty shells. Their populations have been steadily decreasing and I just read that they are now on the endangered species list.  All thanks to us.

I find a Lion’s Paw and a clam shell.

I take pictures of shells rather than take the shells but I fear someone else may not be so considerate of others.  This is a nice knobbed whelk.

Looks like he’s found a tiny morsel.

It is only on the beaches in North East Florida that I find coquina rocks.  They are nature’s composites and were used historically to build many structres.  I love their varied colors and the embedded shells.

At the corner of Amelia River and the Atlantic Ocean, the birds have gathered.   They are there every day in cloudy foggy days and blue skies.

Take a listen in this video and see how many birds are here.

Walking back down beside the river to the campgrond I can see the bend in the land where Fort Clinch is located.  In 1821, after the United States gained possession of Florida which had been swapped around between Spain and England, it was determined that a northern fort was needed and construction was started in 1847.   Of course the fort was named after a general, Duncan Lamont Clinch who fought in the war of 1812 and in the first and second Seminole Wars.

One day I walk all the way down to the Fort which you cannot enter from the shore side but there is a walk way up to the parking lot where the fort entrance is located.

Guns pointed right at you on the beach.  Better obey the fishing rules.  That means you Nancy and Bill.

One day at the ocean I see what seemed like a never ending line of Pelicans riding the waves.  They can’t be seen very well in this picture.  They look like a horizontal line of black dots in the water but this video shows how long the line actually was.

Of course there were also sunrises and sunsets and walks in the wonderful maritime forest but those will have to wait for my final post from here.