Thursday, September 8, 2011

August 27, Monday, the day as long as the email continued


sooooooooooooo,
We get home, I finish packing the car, with the minumum amout of trouble. 
2 backpacks and a big handbag looking thing that carries my netbook, and assorted electronic and electric plugs and things.
You all must know what I mean, and I'm not gonna list it all.
except to mention THE backpack.
THE backpack is THE backpack Roger received from Dendron.  Dendron is the company responsible for the Provenge treatmen.
THE backpack is a backpack with wheels and handle, like people take on airplanes, jets and such.
Very nice backpack and without the advertisal Provenge embroidered on the front would probably retail for a good $100.  yes it is that nice and sturdy.
Not only was it a backpack but it is called a patient comfort kit.
and here I will list contents:
Stainless steel water bottle with clip (Provenge printed on it)
an i-pod looking thing that is supposed to be a radio but we couldn't get it to work (with Provenge printed on it)
6 individual drink mixes (with Dendron stickers on the package)
A plastic ziploc travel bag with ear plugs, sleep mask, lip balm, lotion, anti-bac gel ( with Provenge printed on the bag)
A fleece/knit stocking hat (with Provenge embroidered on the front
Will Shortz Sudoku puzzle book (with Provenge printed on front)
New York Times crossword puzzle book edited by Will Shortz ( wtih Provenge printed on the front)
Pen and Pencil set wtih ( you guessed it Provenge printed on them)
When this arrived by UPS a couple of weeks ago
Roger's first question "What did you order now?"
(Pat's note:  the only things I have ordered through the mail since I have known Roger can be counted on one hand and most of those things were prescriptions that were required to be mail order)
After viewing the contents Roger posed another good question:
Where is the Volkswagen?
Good point, and as of today we still haven't received as such
I figure they will be sending us a key, and we will have to go pick it up.
I hope the key comes by Fed Ex.  Their trucks are more colorful and exciting than the old brown things.
I think they should send a hybrid, since we have to travel to Tulsa for part of this procedure.
It only makes sense they would be concerned about the price of gas.
I hope it is a hybrid truck.  Roger should have a new truck, he deserves it.
It can be just a small truck, but not too small, not one of those golf cart sized trucks, after all we do need to travel to tulsa in this vehicle.
oh, and there were 2 space age looking stress balls with Provenge printed on them. 
I think the stress balls were designed to look like what the white blood cells are supposed to look like once the magic potion has attached.
well,, I got a little off track
so I didn't get the car cleaned out, but I did get it packed with THE backpack, another backpack and my big handbag thing.
and we started out for out trip to Tulsa.
I printed out map quest for the American Red Cross directions and then from the ARC to the Ramada (with pillowtop mattress and breakfast buffet)
and the trip is uneventful until Siloam Springs.  there is road construction and it is 3pm.
Roger enoys his role as navigator and for the most part I do too.  for the most part
We have to stop at ALL the lights.  there are 18-wheelers in both lanes.
Roger enjoys telling me to get in this lane, no, get in that lane, no get over there. 
I just try to drive and stay alive.
I use a few choice words.
I regret not having give him a valium, I didn't think he'd need it until we got closer to Tulsa.
We get through Siloam, get on the turnpike.
Drop the $2.50 in the toll thingy
We stop at the truck stop one mile past the toll place.
I fill up with gas, 7 gallons.
I get coffee, Roger gets a valium.
We head down the road to Tulsa.
We find the Red Cross building. roger is a good navigator and gives me all the right info, team work!
We find the hotel, we check in.  The room is nice.  The hotel is a remodel that has only been open 4 months, so although the location is questionable, it looks like a good pick, and it is as it turns out.
We unload the car, get in the room and get settled.
The room has a coffee maker (4 cups, cute!) and 2 packs of regular coffee, and 2 packs of decaf, I get the decaf going.
I start writing my email and Roger wants to hear what I've written.
Okay, so I read the email I just sent previous to this one.
Roger says I sound like I'm making myself out to be a martyr.
I explain to him, I am not a martyr, I'm just writing my perceptions, and if he doesn't agree with it he needs to write his own.   (pat's note, most of what I write is subjective and I'm sure you can gleen the objective things out of it, I'm not a martyr, just doing what I think should be done as far as taking care of Roger.)
We place a call to get a wake up call at 6am
I set the clock alarm to go off at 6 am
we settle in to watch our standard Monday night programming "The Closer" and "Alphas" and decide we should try to get some sleep.
It is about 8pm.
neither one of us sleeps very well, but we do get some snoozes, neither one complains about the other, so it works.
Alarm goes off, no wake up call tho.
It is 6 am, we go down to get some breakfast.  They have biscuits and gravy.  Roger likes that, and he has a bowl of Fruit Loops.  I have a cheese and berry danish that must have 3000 calories, but at this point I don't care, and I pour myself a cup of coffee.
We head back to room 143 (our room) pack up the car.  I fill up the stainless steel Provenge bottle with hot coffee.
We head to the American Red Cross.
It is 7:30am August 30, 2011
7:40 we arrive at the Red Cross, figure we'll go in and check in then go get some coffee at the Waffle house across the street.
We go in, the guy at the desk asks if we are here for phresis
No, Roger is here for leukaphresis
Oh, I don't know about that, let me get the nurse and talk to her.
Guy at desk leaves, returns shortly followed by nurse
Nurse says come on back,
We follow nurse, she's ready to get things started,  We are surprised and happy at the same time.  No waiting?
She gives us the tour to show where bathroom, movies, and snacks and yes, coffee is.
Takes Roger to room where Denderon leukaphresis takes place.  Private room with big blood separating machine.
Nurse fills out paper work, Roger signs paperwork, I go see if I can find movie.
Nurse starts plugging in Roger's ports, he is plugged in to (or with depending on how you look at it) white blood cell blood sucking machine that also spits left over blood back into Roger.
I give Roger a hydrocodone, valium and bendryl.
The process begins.
about 30 minutes into process, Roger says his lips are getting numb.
Nurse says this is normal, gives him tums.  side effect caused by blood sucking.  Calcium helps.
another 15 minutes pass, Roger gets shivers.  I put stocking cap on Roger, Nurse turns up heat on his electric blanket (yes! the nurse had been doing this since April and she was an angel), then goes to get hot water bottles to place on his chest.
Roger feels better, chills stop.
We watch a movie, sometimes Roger sleeps.  We start a second movie, but we've already seen it and Roger goes back to sleep.
11:30 am the leukaphresis is done.
3 hours almost to the minute from the start.
Roger needs to stay about 30 minutes just to be monitored.
Nurse entertains us with more paperwork which takes about 30 minutes and we leave
Roger is just a little woozy, but says he feels okay.
THE backpack was a good thing.
The valium is a good thing
We head home, stop at Acambero for food and celebration and arrive home about 4pm
I go lay down for a nap. I am pooped.
Roger feels good, full of vim and vigor (I take a guess that the drugs are working their magic)gets on 4-wheeler to go check on dock.  heads back to house sees the neighbor and goes to tell neighbor about our 2 days adventure.
Roger comes home.
We both sleep well Tuesday night.
I think.
I really don't know, I can't remember.  It was a whirlwind of 2 days meshed into one.
Wednesday August 31, 2011
I go work at 9 am to a couple of easy cleaning jobs.  Ask Roger if he wants to go walk today.
yes
I tell him I will meet him at the Wellness center at 1:30
okay
I meet him at 1:30, we start walking, he walks the first 4 laps.
Decides to wait for the friends that are coming.  His phone company friends Mic and Les are going to walk too.
Mic and Les and Les's wife Peg arrive.
We all walk.
Roger decides he wants to work out on one of the weight machines.
I tell him it is probably not a good idea with the port in his neck and chest.
Roger does 20 reps of 30 pounds.
He finishes walking laps to make it a mile.
Roger, Les, and Mic play a game of cut throat on the billiard's table.
Peg and I talk.
Game over, we head for lunch.  It is 2:30pm
We all eat lunch together at La Palamas, downtown Rogers, good food.
We say our good byes, pay our respective bills and all head home in our respective ways.
We are all respectable. :)
4pm
a nurse from United Healthcare (our insurance company) calls.
She wants to know how things are going.
Roger and I start telling her.
She interrupts to say "I see you have a lot going on, I need to refer your case to a case manager.  I will have a case manager call you back tomorrow"
We are stunned.  We are curious if this will really happen.
Good day over all.
We sleep, I sleep really good, Roger still has to get up a few times (you all know why, except maybe Kyle, I think he is too young to know about going to the bathroom several times in the middle of the night)
September 1, 2011 Thursday
11:28 am  Case manager calls
Pat tries not to Pass out while Roger talks to her.
I join in on conversation, she comfirms with Roger it is okay that I speak and listen.
Case manager, Nurse Kristen, begins telling or reading side effects from chemotherapy.
I interrupt.
This is not chemotherapy, it is immunotherapy and has different side effects.
I explain Provenge (the short story)
She says she needs to get with Dr. (somebody) and do some more research.  She will call back when she gets more information.  When would be a good time to call.
after 6pm today would be good, and Roger and I express our concerns.
Lack of confidence in HOG, after seeing the level of care (most excellent) at the Tulsa Red Cross, and worry that they won't know about expiration of blood coming in, and how to do the infusion. 
Kristen says she will look in to all our concerns.
We are stunned.
We are overjoyed.  Pat breathes for the first time in days.
1:39 pm
Case manager Nurse Kristen calls.
Roger takes the call, I am out cleaning a house (I only have 5 houses, and I have scheduled them so I am cleaning on the week after the leukaphresis since the leukaphresis has the least side effects)
Nurse Kristen explains to Roger a representative from Denderon will be delivering his blood and will be able to make sure it is completed to satisfaction. 
Nurse Diane will be taking care of the procedure at HOG
Lets him know there will be a note on the bag to let us know if the Provenge procedure worked.
that it is possible that the procedure won't work, but the blood will be infused none the less.
And that is where we are.
I have faith, Roger has hope and we have love.
"For now we see in a mirror dimly, but then face to face.  Now I know in part; then I shall understand fully, even as I have been fully understood.  So faith, hope, love abide,, these three: but the greatest of these is love."
1 Corinthians 13:12-13
Love to all,
Pat