Moving On to O’Leno After Disappointing News

Monday March 16, 2015
O’Leno State Park
High Springs, Florida

 

 

We are up and on the road early this morning to see David’s doctor at the Moffitt Cancer Center.  Our appointment is at 7:45.  Things get messed up somehow and it is nearly 9:00 before he arrives. 

He confirms that this second therapy combination since August is not working after two months and outlines the diminishing alternatives.  He tries to soften the blow that we have to stop traveling and stay in one place so that David can get non oral treatment. He repeatedly says we must now focus on David’s illness and that will not include traveling.  It’s as if he knows this next therapy they have decided on, #5 in the list since David’s diagnosis in January of 2012, is not going to work either.   He talks to us about Clinical Trials using novel therapies not yet approved.   It’s pretty depressing.

 

 

Back at Quail Run while I am packing up three wood storks fly in.  They are so beautiful flying in but look at those faces.  Interesting but certainly not beautiful.  Still I’m happy to see them knowing that they have been endangered and are making a come back. 

We are pulling out of the site by 11:30 on our way to our previous reservation at O’Leno State Park.  I’ll have to cancel most of the reservations we have after that so that once David has completed the first series in this therapy which requires weekly injections in an oncology clinic rather than oral medications, we can return to Virginia to continue the treatments at the University there and prepare for Carrie’s bridal shower and wedding.  

It doesn’t look like staying in Virginia permanently is really an option since there isn’t the kind of cancer treatment and clinical trials there that would go beyond conventional therapy.   So that’s another big problem to tackle.

It’s a pretty huge set of problems facing us, all overwhelmingly depressing and very very sad.

 

 

We stop for gas at the Exit 285 Pilot/Flying J where we pay $2.369 per gallon.  At O’Leno , after a minimal set up, David begins trying to arrange for the shots at the Gainesville location of the Florida Cancer Specialists.

Dr. David Wright is the one who originally diagnosed the Multiple Myeloma and it is due to his generosity that we are able to move around in most of Florida.  We haven’t thanked him nearly enough for this. 

I should qualify to say David can get treatments at Florida Cancer Specialists other than in the northern part of the state including the Nature Coast, and the Panhandle on the West Coast and North of Orlando on the East Coast or the entire Florida Everglades and Keys. Their clinics are over 100 sometimes 150 miles away from those parts of the state.  This directs that we pretty much have to stay centrally located and near larger cities.

But at least in Florida we don’t have to completely stop traveling to receive treatments.  That is  until the Clinical Trial is the only remaining option which it may well be within 6 months if the remaining treatment possibilities don’t work any better than these past 2.   I’m not sure we can take another year round in Florida.  Doing that in 2012 was very difficult.  So what to do is a real concern.

David’s case of Multiple Myeloma has proved to be extremely resistant to treatment. He’s in the 25% for whom the stem cell transplant resulted in less than a 3 year remission and for whom, so far, none of the tried therapies has worked.  

The question arises, how much of your life do you spend taking powerful drugs just to keep you alive if you can no longer live the life you want to live?

 

 

After 5 winters in Florida we are getting pretty tired of it and had really hoped to be able to go to the California and Arizona deserts for a change.  But that’s not a possibility now. 

We now have no idea what we can do for this the summer since everything depends on whether the current treatment somehow is so different from the others that it will control the myeloma.   We won’t know that for another month or two.   It’s pretty difficult to travel on the east coast on short notice or if you must have a doctor and a hospital in every place you go.  Emergency rooms and Prompt Care facilities don’t work in this case.

 

 

But right now we are in O’Leno State Park for two weeks where we are 30 miles from a FCS facility so we still have some time to enjoy before having to head back to Virginia.

We were here previously in 2013 up closer to the front of the Magnolia Campground Loop in site 28.   There are 30 campsites here.

This time our site is # 16 in the back of the Loop.  It appears we have landed here during the all month long Spring Break season that appears to take up all of March and much of April in Florida.   There are many people here for a mid week, many tenters, many children.

 

 

O’Leno is a lovely park with some beautiful hiking and kayaking possibilities.  We hope to do as many of these as weather and velcade shot and blood draw appointments will allow.

That’s really about all I feel like writing for today.  I’ll post more about the park and what we did with the evening of the first day at O’Leno next time.   I know I’m getting a bit behind here but sometimes it really is the best I can do.

Thank you so much for your comments, each and every one is a bright light in my life.  Not only on the sad posts but on the happy and ordinary posts as well.