Transplant Date

Wednesday May 30 through Saturday June 2, 2011
Lithia Springs Park site 40
Lithia, Florida

 

I know my posts have been as much as a week behind and I can’t really explain that since I have plenty of “waiting” time on my hands and your comments give me something to look forward to.  Chalk it up to lethargy I guess.  Maybe it’s heat induced.  But this post should catch up to within two days of the present where there’s really not much going on. 

 

 

Wednesday

David is still feeling pretty good with the remainder of yesterday’s Dexamethazone. 

And now I have a problem.  Those of you wonderful folks who have been following my blog a while now will remember that I had terrible light sensitivity problems when in the desert southwest last year.   When we were back in Virginia at the end of the year, I had an eye appointment where the doctor found a minor infection which he said seemed to be clearing up but gave me eye drops to help it along.  Somehow he was unaware that they had some sulfa drug in them and I’m allergic to it so it made the condition much worse.  I stopped taking them immediately and hoped the condition would clear up. 

 

I haven’t had any trouble with it until this past week.  I’ve been in Florida now since January and this last week at Oscar Scherer the condition flared up again on multiple days in the sunshine and in the grocery store where there were glaring florescent lights.  My eyes burned, watered profusely and I had a very difficult time opening my eyes at all in bright light.  This posed some problems if I was alone and needed to read food labels or drive home.  I had to sit in the car in as much darkness as I could create to help calm my eyes down.  When I returned home cold compresses and no lights on helped them return to “normal”.

 

 

 

 

So even though it isn’t bothering me at the moment today,  I again go to an eye doctor who doesn’t see anything serious.  He tells me he thinks I have Blepharitis which is an eyelid inflammation.   But I don’t have what seems to me to be a major symptom of that condition.  I looked it up on line and they have some detailed suggestions.  I’ll try his recommendation and their suggestions and see what happens.  But I don’t think this is the correct diagnosis.

We seem to have fallen into a medical black hole.  Aren’t we really too young for that???

 

 

Thursday

I go out running as the sun comes up but it’s 72 degrees even then and soon the heat and humidity have the sweat pouring off of me.  I’m spent when I return and use the outside hose to just cool myself off and rinse off the perspiration.  Feel much better.

After breakfast, we get a response back from a wonderful nurse at Moffitt setting June 18th as the date for beginning three days of work up to see if David will physically qualify for the Stem Cell Transplant.   If all his organs seem strong enough then his stem cells will be collected on the 11th for the transplant on July 16.  More good news when he looks on line at his numbers from the last blood draw and the M-Spike is down from 0.3 to 0.2.  This is good.  We are so relieved to see it moving again.  If he could get to 0.1 or the GOLDEN 0.0 by July the 11th, that would be fabulous but he does have to go off all the medications a month before the transplant so we’ll probably have to hold our breath and hope the numbers don’t start going back up in that time. 0.2 is definitely a highlight for today!!

I spend most of the day working on the housing problem of finding somewhere for Winnona to be where she doesn’t have to be moved for two months and from which I can come and go during the weeks of hospital stay.

 

 

 

Friday

I wake to the sound of rain on the roof which makes it very hard to want to do anything but curl up and enjoy it.

When it stops, we get more phone calls from Moffitt with details about the gigantic number of medical appointments necessary to get approval for this transplant.  Looks like we MAY be able to have one more “vacation” week and then that’s it.  We move into full scale daily visits to Moffitt.  David has to schedule a dentist appointment somewhere in all this to obtain a dental clearance letter certifying that you need no dental work done.  Long story why.  You don’t want to hear it.

It starts pouring rain and from the dinette we watch the beauty as it pours into the thirsty ground and into the river.

 

 

 

David takes his second Dex of this week and later in the morning it’s another trip to Florida Cancer Specialists for the 2nd Velcade shot.  Only two more to go next week and then the treatment phase is finished. Hopefully we’ll get the regular “vacation” beginning on June 10 and then it’s on to transplant work up, work down, and work out beginning on June 18.

I DO NOT recommend this as a way to spend your retirement or your full timing life.

 

 

After the velcade shot, we head over to Brandon’s Good Will to find some gently used clothing that won’t make him look like he’s swimming in it.  Then it’s off to the grocery and the pharmacy to have yet more prescriptions filled.  Approaching the pharmacy we are shocked to see a family of 4 Sand Hill Cranes cross the busy road and wander onto the grass where they hang out for nearly an hour.  What a hoot to take their pictures with the Walgreens sign in the background.   The rain make the pictures difficult and washed out but it sure is fun to see the family of cranes and walk around in the rain taking their pictures.  Color that a bright spot for today!!

Rained all day long so this was a good day for errands.  I know the plants, the river, the spring and all of us are loving this rain.

 

 

 

Saturday

The warriors have come in for the week-end but not so many probably because of the rain all day and night yesterday.  Or perhaps because they have not yet recovered from the Memorial Day bash.

However there’s only one camper that matters.  Yesterday we again started having low voltage electric problems in site 40.  It seems to have to do with whether or not someone is in site 39.  If they are, we have problems, if they are not, we do not.  The park honchos again offer to let us move to another site which we have no desire to do.  Why they can’t find the problem and fix it?  Who knows.  But we are hoping that the rig in #39 will  leave tomorrow so we’ll just put up with it.  Thank goodness for our Progressive Industries protection.  I cannot recommend it highly enough. 

I spend the morning consolidating the list of RV Parks within 30 minutes or so of Moffitt.  I find 4 that might work, I check their websites, David calls them, I map out directions and we spend the afternoon driving all around Tampa to take a look. 

 

The first two are the closest at less than 10 miles from the Cancer Center but they are just so depressing and run down that I can’t possibly do it.  And the prices aren’t that much better than the other two.  Thank goodness for the “specials” during July and August when no one in their right mind, thinks me, would want to spend two months in Tampa.

 

The one I like the best is of course the furthest away but only 17 miles.  We go to Moffitt and then drive to the park to see how long those 17 miles will take.   The answer is that on a week-end day of significantly lessened traffic it took 45 minutes to drive since the only route between the two goes totally through Tampa and has an endless line of traffic lights.  No way to take an expressway or freeway which I usually don’t like but in this case, with daily hospital visits, would be preferable.  I suspect it would take at least half again as much time during the work week.  Amazing how long it takes to go 17 miles.

 

So I suspect, unless something new pops up within the next couple of weeks which is in close proximity of I 75, the easiest road to take to Moffitt, I will be hanging out at Quail Run in Wesley Chapel, Florida for part of June, all of July and a good bit of August.  It too is 17 miles away but most of that is on I 75 so it only takes about 25 minutes even in traffic.

Wish I’d taken some pictures of these parks but it was so hot today 92 that I felt totally drained and hardly got out of the car.   The one here of the entry gates is from Quail Run’s web page.

 

 

I know that none of these is going to feel like “home” to me.   They are just not what I enjoy when I’m at a campground but I have to be somewhere for 2 months.  They were all surprisingly full.  But some sites seemed like permanent or semi-permanent residents with wooden decks and storage buildings although many residents were clearly gone from “home”.  I just keep wondering why since  they have wheels would they pick these places on the outskirts of Tampa to use as even a snowbird escape. 

Got home too hungry to make dinner so we had left over pasta and then after being fortified made up some banana blueberry ice cream for dessert.   We were able to sit out on the patio and enjoy the decreasing evening temperatures which turned out to be today’s highlight.

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.

Fun in the waves

Saturday May 26 & Sunday May 27, 2012
Oscar Scherer State Park Site 89
Osprey, Florida

 

What?  Another beach blog? 

Yup another one.  I apologize to those who didn’t say they were missing the water.  These are the last two days before returning to medical life so I want to be in the water and lucky for me the waves in the gulf are uncharacteristically up both days.

 

David is set up for relaxing in his chair

 

There are few things I like better than jumping in  and riding on the waves.

 

But since I don’t have the sun avoid attire I mentioned in the previous blog and about which there was sadly not one comment or suggestion (guess it wasn’t such a good idea after all), I can’t stay out playing too long or I’ll get too much sun.  Serious bummer for me.

 

 

So here I am watching other folks who care less about sun and shamu of course who doesn’t have to be concerned at all.

 

 

The Memorial Day sundown party gets into full swing about 7:00. 

Red, white and blue are popular colors and the flags are being waved and worn.  Multiple jingle skirts in every picture I take. The jingle skirt lady whose picture was in the last post is making some money this evening.

 

 

 

Drummers and dancers as usual.

 

Here’s a good shot of the jingle skirt and top over swim suit attire.

 

 

 

Another beautiful sunset, this one over the waves of the gulf.

 

 

 

 

 

These two were swimming in the gulf as the sun set.  They came out later to watch the after dark party.  Seemed sweet to me.  Remember those days???

 

On Sunday I am back in the early morning.
 

Same spot as usual but there are more people than on the week days. 

 

 

I notice this group of older couples.  Quite a contrast from last night’s moonlight swimmers as the men gather in one group and the women in another to chat while standing in the water.  I am amazed at how long they are out there just standing and talking.

 

Someone has been watching the weather forecast and knows about the winds so they’ve come prepared with wind sox.  They look quite festive. 

 

Back in the waves I go. 

Still no sun block attire.  But lots of company.

 

 

The flag changes from Green to Yellow.  More caution needed the lifeguard thinks.

 

 

 

 

 

The waves seem fine to me green flag or yellow.

 

 

In fact, they seem beautiful.  I had no idea the waves could be so terrific in the Gulf.

 

Ducks love water!

I can’t stay in the water as long as I’d like.  Have to get out of the sun.  Next thing I know, I’m up relaxing on the shore and off go the Duckie Brothers.

 

 

The waves seem fine for me but look like a bit much for Moby and Handy.  Although Moby does have his sunglasses and boogie board, Handy is rather weighted down with his tool belt.

 

 

They are quick to remind me that they are DUCKS and ducks can handle water.

 

But just as I suspect, Handy gets bowled over by a wave. 

 

Time to come out of the water boys.

 

The winds pick up even more. 

We are hungry.  Time to go.
As we leave, I get this shot of a sailboat working its way against the wind and waves.  So long Nokomis beach.  Hope it won’t be TOO long before I can come back again.