Ups, downs, blasted

Saturday July 14, 2012
Quail Run Lot 15
Wesley Chapel, FL

 

The best thing of the day happened when I checked the mail.

The mail man left me a note in my mailbox that read: You have a package at the office. Okey dokey then. Off I go with my little card. The very nice lady behind the counter with whom I have talked 3 times and STILL haven’t asked her name, brought me not one but two packages. One I was expecting. She says “one is your mail and one is from The Good Luck Ducks????” You can tell she’s dying to know who are they and what’s in the box.

HA! I say, those ducks again.
She thinks I’m crazy.
You see those Ducks are the Godmothers (just appointed unbeknownst to them) to Moby and Handy. Just last week these same Ducks sent Roxianne here to keep Moby and Handy in line. Click here to see her picture. I picked her up in this very same spot. And today, well just look at this.

You see I, for THE FIRST time in my ENTIRE life, won a prize. Luckily I didn’t have to do anything to win it like sing or dance, The results would surely have been different.. All I had to do was enter and lo and behold I was the winner of two boxes of Space Bags. And today they showed up in my mail.

 

This day is a mix of ups and downs.  But let me prepare you, this package the best thing that happened all day so I am sending a giant THANK YOU out to those Ducks for arranging the delivery on this very day and bringing some cheer to this July 14 Saturday. 

 

RIP Dell Latitude

 

On to one of the downs.  David’s 5 hour fix didn’t hold and the computer is caput, done, finished, no more can repair. Just THE DAY he needs it most for keeping him occupied as he checks into the hospital for an undetermined number of days where he cannot leave the floor let alone the building.

 

 

 

 

Sure doesn’t pay to save even a little.

This followed our being informed that because we haven’t used up all of our savings, we do not qualify for financial aid for the temporary housing we will need for 10 days to 2 weeks following his discharge. $100 a night. OUCH! Rather a blow to the wallet these things.  Seems the rich can afford whatever they want, there is financial aid for the poor but if you are in the middle class well, no one is going to help you not become one of the poor.

 

A Good thing is a visit from the local long legged folks who came right over to the campsite and checked out both Winnona and Ruby as I returned from the mail run.

View Full Album

 

And then there is a pretty good thing. When we show up for admission, David is assigned to a room in the “new wing”. Or at least we think this is good. Or is that just the cultural assumption that anything new is better than anything old. Now that I think of it, we have an old farmhouse not a new house, we buy used cars, used RVs, used dollys, even used books. Maybe I’d better rethink this “new” assumption.

 

His new digs are room 3715 Moffitt Cancer Center.

We got him fairly well settled in. He does have a window but all he can see from his bed is the wall of the building next door unless he stands up at the window and looks down. I think the views are in rooms 3709 and 3711. Thou shalt not covet thy neighbor’s window.

 

Ok now for the other not so fine parts of this day.

They would not be doing the high dose chemo BLAST until 10pm. So we had asked and initially been told that after he got his things into the room we could go out for one Last Supper. That was by the Saturday nurse. We probably should not have trusted her knowledge given that she didn’t know the phone number was written on a huge white board in the room and spent some time trying to figure out the number. She couldn’t figure out how to turn the TV on, seemed to be reading from a script and in general didn’t seem to know what was going on the way someone who had worked here 3 years as she claimed she had should have known.

Anyway, when we mention our plan to someone else on staff they drop jawed and tell us that isn’t possible. Apparently, like prison, once you are “admitted”, there is no going anywhere off the floor until you are “paroled discharged”. So I start hunting for the take out restaurant that will have to stand in for a last get away.

I think I’d found it. He wants, of course, more junk food namely a burger and fries.  I haven’t yet read him Page’s comment on yesterday’s blog. Note to Page: I’ve tried to find a way to contact you with no luck. Drop me an email to RVDreamlife@gmail.com. I want to find out more about what you saw.

 

Ok so I think I’ve found a pretty fine compromise between what he wants and what he “should” have.

It’s Evos.  Click the link to see what they have to offer and if there is one near you. Evos had a location just down the street from the hospital. They advertise “our steakburger is made with naturally humanely raised beef without the added hormones and antibiotics.  They airbake instead of deep fry their fries and have a selection of fruit shakes like mango guava or milk shakes made with organic milk. 

GREAT!!
I go out to the the parking garage, find my way to the shopping center with their name on the sign by the street and drive around and around passing an Indian Restaurant, A Japanese Restaurant, A Chinese Restaurant (I’m not kidding here) a deli, Appleby’s, another branch of First Watch of yesterday breakfast fame and Five Guys. Finally I roll down my window and ask a woman crossing the parking lot
 

“Can you tell me where Evos is”?
“Well it used to be right next to the Dollar Tree, but it’s not there any more”.

Ahhhh no wonder I can’t find it. I check to see where another one might be. 20 miles away on the other side of Tampa. SIGH!  I call the patient with the bad news.

Well just bring me 5 Guys.
Things are going from bad to worse.  He must be desperate since he really does not like 5 Guys. I remind him of this.
He replies, Well maybe they are different here, we’ll give them one more chance.

I order, I wait, and think
David was a burger affectionate in his previous life. He isn’t going to really like this.
My order is ready, I have to hold the bag away from my clothing since I don’t want those oil stain from the brown paper bag on my clothes.

Cut to the chase, it was an OK burger on a terrible ordinary white air bread bun, and there were a lot of OK fries. We can’t figure out how does this chain have “best burger” signs plastered all over the inside of its store from numerous newspapers up and down the southeast coast?

No pictures of us eating the food with the greasy bag right next to us. Why not? Well truthfully I forgot to take one. But this really wasn’t a meal to remember. I’m sure you can imagine it. Or maybe you like Five Guys.

Today is known as DAY minus 2 or Day –2.

Notice the beverage is not beer and check out those no slip sox.

This is the day or rather the night they blast him full of a high dose chemotherapy agent called Melphalan. The infusion lasts an hour and over the next week will kill pretty much everything sending his white blood count, his hemoglobin count, and his platelet count all down to zero before they begin to recover. These are going to be a very hard 10 days or so. We are both frightened.

There are many possible side effects to this high dose chemotherapy. Most will not show up tomorrow but increasingly over the days and weeks to come. But one that may show up sooner is mucositis – mouth sores – well actually they can be sores all up and down the GI tract. This makes it very difficult to eat even if you still have taste buds or the desire to eat. It is strongly suggested that you suck on ice before/during and after the infusion.

I wonder why in the world they give this stuff at 10PM if they want him to suck on ice before/during and AFTER.  It will be 11:00 at night AFTER.  He’ll be tired. Why not 10 AM so he can suck on ice all day long. But this is their protocol.

He is and has been told by multiple people that infusion will happen at 10pm. He starts sucking on ice at 9:45. It’s 10:15, 10:30, 10:45.  They don’t show up to begin doing it until 11PM.   Are you kidding?   This is a hospital with orders for specific times.   No one has come to say there is any delay.  No one has come to say anything. 

No patient should have to sit for an hour waiting for a killer drug he has been worrying about for weeks.  In my opinion, this is not compassionate and is in fact cruel.

For the first time, I’m beginning to wonder about Moffitt. First the nurse who doesn’t seem to know what’s going on and now the orders that the pharmacy can’t fill on time?

He sucks ice for an hour before the treatment starts rather than an hour afterwards which would be much better but he is too tired at that point to suck on ice. I am NOT a happy camper about this.  The poor charge nurse takes the brunt of my demand to have this explained.  Why was the drug so late and why was he not told it would be.  He was left to wonder and worry about this huge effect on his life.

 

So how does the day stack up over all??

On the hero side are the Ducks and the space bags, the Sandhill Cranes and MAYBE the room in the new wing.

On the Villain side are the laptop which died just when he needs it most, the dispensers of financial aid for deciding that you must use up all of your savings before they will help you when the reason you want help is so you don’t have to use up all of your savings.   Then there are the hospital rules forbidding a last supper off grounds, Evos for moving, 5 Guys for being convenient but not worthy of the praise they receive,

The pharmacy  or staff at Moffitt, whoever are responsible for the delay in this HORRIBLE procedure qualify as major villains but the grand daddy of them all is Multiple Myeloma for making this Melphalan blast and all the rest necessary.

Taken at about 7:00 pm

Tomorrow begins life as he and we have never known it before.