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.