The Last Cycle and then where?

Monday May 28 and Tuesday May 29
Lithia Springs Park Site 40
Lithia, Florida

 

 

It is Memorial Day and Oscar Scherer is clearing out. 

 

 

Everyone is leaving on the last day of their 3 day week-end.  We get packed up and even after a 20 minute wait at the dump station, we are hooked up, car on dolly and rolling toward route 75 North  by 10:30.   At noon we are in line to get in to Lithia Springs where each car has to be told that the spring is closed due to lightning and they can pay the park entrance fee and come in and wait to see if  the park can reopen it or turn around and leave.   Each car slowly decides and executes.

 

 

 

It’s our turn and the park manager tells us to pull over there.

 

 

By now, He knows us by sight and name and before he can rent us a site again, he has to check our total nights since we’ve been here so often before.  The Hillsborough County Parks have a 90 day maximum stay per year, and a 2 week single stay policy.  This park is the closest reasonably price place to stay near Florida Cancer Specialists in Brandon which is why we keep coming back.  The 2 week limit has worked fine for us since David’s treatment lasts 2 weeks and then he has one week with no meds before beginning another treatment cycle.  So we leave Lithia on “vacation” for that week and come back for the next treatment. 

 

We wait while the manager checks with the other parks to see if we’ve stayed there too.  The 90 day limit is for all their parks in combination not just for one park. The verdict is we have not overstayed our welcome yet but we are getting close.

 

 

Hopefully it won’t matter since David is getting close to the end of treatment as well.   Tomorrow will start his last 2 week cycle and then we don’t know exactly what will happen or where we will go but ultimately we will no longer be able to be at a park which requires us to move every two weeks.   I’m not even sure David will be allowed to be in the motor home after the transplant since it is fully carpeted and upholstered and thus hard to keep as clean as everywhere he is must be after his immune system is completely destroyed.

 

 

It’s difficult having no idea how any of this is going to go.

 

 

No idea where we will be staying or what it will cost or for how long.  No idea whether he will be strong enough to do the transplant or ever be even remotely the same after he does it.  Each person reacts differently to this drastic procedure.  All are glad to add a few years onto their lives especially if they are not too debilitated by the procedure.  But whether David will ever bike any Rails to Trails or hike Angel’s Landing in Zion, or play racquetball or kayak in the Bay again is a total unknown. 

 

 

But for now we’re under our 90 days here and since it is Memorial Day and everyone has pulled out, we are able to slip into site 40 again where we hang out and watch the rain drops pepper the surface of  the river.  This fellow has taken up my spot on the river but no matter since it is raining too hard for me as you can see by the spots on the picture.

 

 

 

Tuesday is doctor day. 

 

Huge leaf on the path to the kayak launch. 
Beautiful but probably an exotic invasive like Multiple Myeloma. 

 

We go to Brandon to Florida Cancer Specialists where we spend 4 1/2 hours.  They take blood, we wait for the results.  We meet with Dr. David Wright who can’t tell us why the numbers have flattened out 3 times in a row now.  This is now 3 weeks of the same number.  Low but not low enough.   Down from the initial 5.3 to 0.3 now but it needs to be 0.0.   We were sure that when it was dropping by half each time that the visit after it got to 0.3 it would be 0.15 and then 0.0 today.   But that hasn’t happened.  It seems stuck at 0.3 although the numbers from today’s blood draw are not in so the jury isn’t out.  Dr. Wright has no idea whether we can get it to 0.0 which would make the transplant much more likely to keep David at Complete Remission if he went into it at that state.  But we’re still hopeful.

 

 

The end of the induction treatment phase is near.

They set up what will be David’s last appointment with Wright on June 19 and he gets a subcutaneous velcade shot.   Only 3 more Velcades to go and he’s hopefully finished with that medication on Friday June 8.   We are really anxious to see if, as Wright contends, David will put weight back on, his fatigue will go away or at least significantly lessen, he will have more strength in his legs, the back pain will go away.   Sounds mighty optimistic to me but it sure would be terrific. 

 

Path from the back of the site leading
to the kayak/canoe launch.

 

Of course this will take at least a month after the medication ends to begin to show up and hopefully David will be in transplant shortly after that.  Enduring the transplant and recovering from it is an additional set of problems and takes multiple months.  We are still waiting for final approval for the dates when all that will take place.  We may be able to return here to Lithia for one more 2 week stint without medications before all the transplant work up begins.

 

And then what?

Then we must find some sort of housing for at least 8 weeks at a minimum to accommodate the entire transplant process.

It’s been a long day and I am tired when we return home.  David is feeling pretty good since today is a Dex day so he fixes dinner.  I read aloud some Shadow Country,  check for blog comments to cheer me up and the day is done.