3rd and last infusion did not go well.
Delivery was 4 hours late.
Roger got rigors, infusion had to be stopped twice, so rigors could be treated and controlled.
Left house at noon, arrived home at 9:30 pm. Long day.
Roger is sleeping now, on the couch.
He was just awake enough to say "its only 9 o'clock" and then fell back asleep.
So I'm leaving him there, and sleeping on the other couch, just to be close
since there is a chance he could get chills again.
Hard day for Roger.
Roger and his sister, Becky relax by the creek
Friday, September 30, 2011
Thursday, September 29, 2011
Pleasant visit with surgeon
What a surprise today!
We get in to visit the surgeon.
The nurse ask if we are here for the removal of the cathether today.
No
Then asks why Roger is here.
We explain the appointment was made because we had not seen the surgeon for 30 days and we would have to see the surgeon before an appointment could be made for removal.
Nurse says that's silly
and we agree
says the doc will be in shortly.
and she is
and she says that is silly too
and we agree
AND THEN
she asks if Roger has a co-pay,
yes, $30
ouch, she says
and then she says
We need to cancel the appointment.
She checks out the port and explains the removal and then we follow her to the front desk
Doc tells lady at front desk, we need to cancel this appointment
lady at front desk says no problem, and schedules the removal appointment for Monday.
Surgeon says Roger was not here today,
We reply, we were never here.
and we leave
and we go walk at the Adult Wellness Center
Roger gets his mile in and does some weight lift machine arm thingy
and we go out to eat at La Palamas
and think what a wonderful world.
Tomorrow is 3rd infusion, hopefully last.
We get in to visit the surgeon.
The nurse ask if we are here for the removal of the cathether today.
No
Then asks why Roger is here.
We explain the appointment was made because we had not seen the surgeon for 30 days and we would have to see the surgeon before an appointment could be made for removal.
Nurse says that's silly
and we agree
says the doc will be in shortly.
and she is
and she says that is silly too
and we agree
AND THEN
she asks if Roger has a co-pay,
yes, $30
ouch, she says
and then she says
We need to cancel the appointment.
She checks out the port and explains the removal and then we follow her to the front desk
Doc tells lady at front desk, we need to cancel this appointment
lady at front desk says no problem, and schedules the removal appointment for Monday.
Surgeon says Roger was not here today,
We reply, we were never here.
and we leave
and we go walk at the Adult Wellness Center
Roger gets his mile in and does some weight lift machine arm thingy
and we go out to eat at La Palamas
and think what a wonderful world.
Tomorrow is 3rd infusion, hopefully last.
Wednesday, September 28, 2011
Roger, cancer, and immunotherapy: Round 3 Part 1
Roger, cancer, and immunotherapy: Round 3 Part 1: Back from Tulsa, leukaphresis went well. Roger was more fatigued this time. Slept well last night, had at least one 5 hour block of sleep ...
Round 3 Part 1
Back from Tulsa, leukaphresis went well. Roger was more fatigued this time. Slept well last night, had at least one 5 hour block of sleep when he didn't get up for the bathroom.
"our" Nurse Amy in Tulsa required hugs before we left, she was the bright spot in all of this, and was a big help from the first visit. Amy called the oncology clinic to inform them of the clogged port problem and suggested what had worked in other patients. The oncology clinic responded less than friendly and the nurse at the oncology clinic last friday was quick to inform us, she had done the phresis before and was well aware of how things were done. Personally, I'd trust Amy.
Sooooo, if things go well on Friday with the 3rd and last infusion, no more leukaphresis (for now and the immediate future), and the cathether (port) comes out next week. Roger has an appointment with the surgeon tomorrow so that he can make an appointment to have the cath taken out. Yes, we have to go to an appointment to make an appointment. A $30 appointment to make a $30 appointment. hmmm, I'll not digress into that discussion right now, it would be lengthy and probably involve a march on D.C. or a bike ride to the halls of Congress with some choice words.
Surgeon visit Thursday, Infusion on Friday.
Hope we don't have any collisions with the motorcycles, as it is Bikes, Blues and BBQ week in Fayetteville. fortunately most events are on the opposite side of town.
Love to all
"our" Nurse Amy in Tulsa required hugs before we left, she was the bright spot in all of this, and was a big help from the first visit. Amy called the oncology clinic to inform them of the clogged port problem and suggested what had worked in other patients. The oncology clinic responded less than friendly and the nurse at the oncology clinic last friday was quick to inform us, she had done the phresis before and was well aware of how things were done. Personally, I'd trust Amy.
Sooooo, if things go well on Friday with the 3rd and last infusion, no more leukaphresis (for now and the immediate future), and the cathether (port) comes out next week. Roger has an appointment with the surgeon tomorrow so that he can make an appointment to have the cath taken out. Yes, we have to go to an appointment to make an appointment. A $30 appointment to make a $30 appointment. hmmm, I'll not digress into that discussion right now, it would be lengthy and probably involve a march on D.C. or a bike ride to the halls of Congress with some choice words.
Surgeon visit Thursday, Infusion on Friday.
Hope we don't have any collisions with the motorcycles, as it is Bikes, Blues and BBQ week in Fayetteville. fortunately most events are on the opposite side of town.
Love to all
Friday, September 23, 2011
Upcoming Round 3
Visit today with oncologist for post round 2 and blood work. Roger's weight is down to 162, 4 pounds down from the start of Provenge. Fatigue still haunts Roger, and he gets short of breath easily, lungs being affected (smoking doesn't help) and the doc talked to him seriously about working on quitting after Provenge. The nurses jokingly suggested eating Krispy Kreme donuts to gain weight, and doc suggested protein shakes, and doc figured the amount he spends on cigarettes would buy a lot of Krispy Kremes. Little bit of humor in the day. Nurses were prepared for cleaning the port, as Nurse Amy from Tulsa had called the clinic to let them know the hepron solution to use so as not to clog the port. At least we benefit for the last round and for anyone else who passes through the clinic for Provenge. While exciting to be the first, it is also guinea pig type of experience. Resting up this weekend, Round 3 starts Monday when we travel to Tulsa for 3rd Leukaphresis.
Wednesday, September 21, 2011
Yeah!
Call from doc today, or should I say from the doc's nurse. They are sending scripts for meds to our prescription plan.
Tuesday, September 20, 2011
Medications and battles
It has become apparent half the battle is in getting medications.
We were informed today, all the medications for Roger, which we were going to have transfered to the oncologist, have apparently disappeared.
Our case manager with our insurance company checked with the oncologist's office and the nurse(s) she talked to said there was no record of any scripts for any medications.
Funny, that was the gist of our conversation with the 2 nurses and the oncologist on Sept. 9.
It is scary and infuriating.
Our case manager, Kristin, is a God send. She straightened them out. Now we just see if our prescription company really gets the scripts.
and if you check the blog for Sept. 9 you will see we asked 2 nurses and the doc about the "list", and we both recall the doc asking where to send the scripts. Does everyone have this kind of problem with meds?
I know our friends here in Arkansas do. Is this prevalent in other parts of the United States?
We were informed today, all the medications for Roger, which we were going to have transfered to the oncologist, have apparently disappeared.
Our case manager with our insurance company checked with the oncologist's office and the nurse(s) she talked to said there was no record of any scripts for any medications.
Funny, that was the gist of our conversation with the 2 nurses and the oncologist on Sept. 9.
It is scary and infuriating.
Our case manager, Kristin, is a God send. She straightened them out. Now we just see if our prescription company really gets the scripts.
and if you check the blog for Sept. 9 you will see we asked 2 nurses and the doc about the "list", and we both recall the doc asking where to send the scripts. Does everyone have this kind of problem with meds?
I know our friends here in Arkansas do. Is this prevalent in other parts of the United States?
Friday, September 16, 2011
Round 2 Infusion
Home from Round 2 infusion of beautiful pink blood, labelled as having a minumum of 50 million cells with the antigen attached, 50 million little pac men searching for cancer.
Roger didn't feel so grand after this infusion.
Little bit of the chills, and well, the weather is damp and chilly, that too might have contributed.
Also felt a little light headed.
No stopping for lunch today.
Headed home had some frozen pizza. It was hot and good.
Roger is wrapped up in his snuggie (that Dorsey made for him a couple of years ago at Christmas), and resting.
Found another man who has had the Provenge treatment. He was in much worse positon than Roger. His cancer adventure makes Roger's battle a walk in the park with a picnic. Can send the details of his blog if your interested, I can always recap here too which I will later. Too pooped right now.
 |
| Roger settles in to read |
Thursday, September 15, 2011
availability of Provenge
Was just reading an article published in Seattle newspaper on Provenge. there are only 2000 spots for the first 12 months, as the treatment becomes available. Roger is one of them. He IS a lucky one.
Wednesday, September 14, 2011
Disclaimer (there's always one)
What I write here is in no way intended to make light of the situation.
There really is nothing to make light of when you are dealing with cancer, or any other chronic disease.
But when you are in such a situation I find it best to look for the light side.
When I write "he laughs" or "we laugh" it is a precious moment. It is not taken lightly, sometimes that laugh is the most important part of the day and if not the most important, it is the best part of the day.
Some of the mundane details like our lunch debate, the price of gas, the waiting, are just that mundane.
And sometimes the mundane details are the parts of the day that remind us life goes on, even in the midst of crisis. And we can appreciate those moments as well. that even tho we are faced with life changing events, life does go on...
Sometimes it is the mundane details that take our minds off the seriousness of the situation. Thus, some of those are in the writing as well.
and sometimes it is good to write just to get stuff out of one's head.
There really is nothing to make light of when you are dealing with cancer, or any other chronic disease.
But when you are in such a situation I find it best to look for the light side.
When I write "he laughs" or "we laugh" it is a precious moment. It is not taken lightly, sometimes that laugh is the most important part of the day and if not the most important, it is the best part of the day.
Some of the mundane details like our lunch debate, the price of gas, the waiting, are just that mundane.
And sometimes the mundane details are the parts of the day that remind us life goes on, even in the midst of crisis. And we can appreciate those moments as well. that even tho we are faced with life changing events, life does go on...
Sometimes it is the mundane details that take our minds off the seriousness of the situation. Thus, some of those are in the writing as well.
and sometimes it is good to write just to get stuff out of one's head.
Round 2 begins details
Monday September 12, 2011
I have a dental appointment at 1:00 pm figure we'll leave the house at 12:30.
Roger wants my windshield wipers replaced, and get his hair washed at the barber shop (doesn't want to do it at the sink at home even tho we now have a handy dandy sprayer at the faucet since we had to replace the faucet) It is easier at the barber shop to get his hair washed. Can't do the hair wash at home, can't get the port wet.
At 11:50 Roger asks if I am ready
no, I figured we'd leave at 12:30
he's ready to go
we leave at 12:00
he's going to leave me at the dentist office while he goes to get windshield wipers and hair wash.
We head for town, stop at the auto supply, I go in to get the windshield wipers, come out
Roger sends me back inside to get someone to put the windshield wipers on.
I do and cashier puts on wipers.
We go to dentist office, they are closed. It is 12:20
They close during lunch hour 12-1
We head to get hair wash
Nice lady at shop washes his hair
Roger gives the lady $5 and we head out
Nice lady doesn't comb or brush his hair, so first things first Roger brushes his hair
We head back to dentist office. It is 12:45
We park in the shade and wait.
Office opens at 1 I get right in.
No waiting.
Roger waits outside.
I get my teeth cleaned, dentist checks my teeth, I am outa there.
We head to Tulsa.
Against my better judgement I do not medicate Roger for the trip.
I don't like to dispense pain and anxiety medication unless absolutely necessary and Roger agrees.
The decision not to medicate is a good one tho. Roger behaves much better this trip.
We get to Siloam and start checking the price of gas. $3.43. I think great when we get to the turnpike gas station it will be $3.37. It is usually a nickle cheaper there.
We get to turnpike gas station and the price of gas is $3.55. I am discouraged.
This is the first time I've had to get gas since the last trip. I have 1/4 tank of gas and fill it up. Car takes 8 gallons. So I have just paid 96 cents more than I should have, and I know I shouldn't complain because it is the first I've had to put gas in my car since the last trip 322 miles ago. I breathe, get coffee and Roger finds the old fashioned kind of lemon drops the yellow kind with sugary kind of coating, and he cleans them out-they have 5 bags. (note: the new kind of old fashioned lemon drops are neon yellow, these he has found are not the neon yellow). We head out for the last leg of the trip.
We have reserved a room this time on the east side of the Red Cross, thinking that it might be kind of fun to go to the casino for a bit and take $20 for entertainment. We get to the room. The bathroom vent fan is noisy. The air conditioner is noisy. The beds are hard as a board and the TV is about 17 inches. It was $10 cheaper than the room on the last trip. We get settled in the room and sit to watch the news. We are too tired to go to the casino. We are too tired to listen to all the noise associated with going into the casino. The bells and whistles, all those people, driving the two miles to the casino seem like too much for right now. So we go to the Arby's across the street for supper. I have a salad, Roger has a beef sandwich combo. It is not great food, but it is food and we go back to the motel. And we watch Eureka, The Closer, and Alphas.
And we shut the tv off and the lights and it is pitch black and neither one of us can see anything. So I turn on the noisy bathroom fan/light and shut the door and at least we can see the light from under the door. So we are trying to sleep with the noisy a/c, the noisy fan/light, and slamming doors noise from the hall way.
We sleep.
A little.
At 4:30 am Roger decides we should just get up and we turn on the TV watch some news, find a radio talk show on TV, real nice show not like the weirdo tv radio talk show.
At 6 am I head down to get some coffee, their continential breakfast doesn't start until 6:30 am but they do have one of those fancy thermos thingys with the pump on it, so I get two tiny stryofoam cups of coffee to take upstairs in the elevator.
I get to the room and the coffee is lukewarm. Lukewarm coffee is not good first thing in the morning.
So we decide to pack up and go out for breakfast.
there is a Waffle house near the Red Cross so we head there.
We find the Waffle house but there is no left hand turn lane to get there, but there is one about 1/2 block and I tell Roger to hang on and drive into the oncoming traffic really fast to cut into the waffle house. by the way, there was no oncoming traffic, nor was there any traffic behind me, but it sounded more exciting.
We order and eat at the Waffle house and they have hot coffee and the waitress keeps the cup filled and it was food to fill our tummies.
We leave to go to the Red Cross (it is only a couple of blocks) and it is 7:10.
Our appointment is for 8:30 but we go ahead and go in.
The night security guard goes back to tell the nurse we are here, returns to let us know she's still getting ready.
We are okay with that we are really early.
The security guard engages us in converstation, places to go in Tulsa, how big the city is these days, wildlife around the city. He's nice.
8:00 the nurse comes out to get us.
Yeah! It is nurse Amy again. She did the first leukaphresis and she is a wonderful nurse.
She gets started making Roger comfy and starts the plugging him into the white blood cell sucking machine.
I go get coffee (it is hot and fresh), and go pick out a movie, John Wayne in "the horse soldiers" and return to the room.
Amy is having trouble getting the port cleared.
Apparently the port shouldn't be used to draw blood for the blood tests, and really not for the infusion. That is unless the nurse who's doing the drawing or infusion knows how to put the right stuff in the port .
Well, that is partly our fault for letting the nurse on Friday use it to draw blood for his lab work at the oncologist. She put the wrong type of hepron in the port.
So, it took Amy about 20 minutes to get the port cleaned out and ready for the blood sucking machine.
But she took care of it and gave me instructions to give to the nurse on Friday for the infusion.
and she was real nice about the whole thing to us, not so kind to the nurses who did this.
And the leukaphresis took exactly 3 hours, and Roger did great. There were no chills this time, and he only had tums once (to replace calcium). I'd given him calcium chews the evening before and at breakfast. And I did medicate him with pain and anxiety meds.
And around noon we headed out.
Roger asks "Where do you want to go eat?"
knowing, as I do, that this is a trick question, I suggest the Las Palamas on the way home on the right side of the road.
And we stopped for lunch.
And arrived back home about 4.
and we were tired, Roger more so.
and I slept good,
Roger not as much, he has to get up several times for the bathroom,
but it was good to be sleeping back in our own bed.
and we decide to spend the $10 extra bucks for the nice motel room with the breakfast on the next and hopefully the last trip.
I have a dental appointment at 1:00 pm figure we'll leave the house at 12:30.
Roger wants my windshield wipers replaced, and get his hair washed at the barber shop (doesn't want to do it at the sink at home even tho we now have a handy dandy sprayer at the faucet since we had to replace the faucet) It is easier at the barber shop to get his hair washed. Can't do the hair wash at home, can't get the port wet.
At 11:50 Roger asks if I am ready
no, I figured we'd leave at 12:30
he's ready to go
we leave at 12:00
he's going to leave me at the dentist office while he goes to get windshield wipers and hair wash.
We head for town, stop at the auto supply, I go in to get the windshield wipers, come out
Roger sends me back inside to get someone to put the windshield wipers on.
I do and cashier puts on wipers.
We go to dentist office, they are closed. It is 12:20
They close during lunch hour 12-1
We head to get hair wash
Nice lady at shop washes his hair
Roger gives the lady $5 and we head out
Nice lady doesn't comb or brush his hair, so first things first Roger brushes his hair
We head back to dentist office. It is 12:45
We park in the shade and wait.
Office opens at 1 I get right in.
No waiting.
Roger waits outside.
I get my teeth cleaned, dentist checks my teeth, I am outa there.
We head to Tulsa.
Against my better judgement I do not medicate Roger for the trip.
I don't like to dispense pain and anxiety medication unless absolutely necessary and Roger agrees.
The decision not to medicate is a good one tho. Roger behaves much better this trip.
We get to Siloam and start checking the price of gas. $3.43. I think great when we get to the turnpike gas station it will be $3.37. It is usually a nickle cheaper there.
We get to turnpike gas station and the price of gas is $3.55. I am discouraged.
This is the first time I've had to get gas since the last trip. I have 1/4 tank of gas and fill it up. Car takes 8 gallons. So I have just paid 96 cents more than I should have, and I know I shouldn't complain because it is the first I've had to put gas in my car since the last trip 322 miles ago. I breathe, get coffee and Roger finds the old fashioned kind of lemon drops the yellow kind with sugary kind of coating, and he cleans them out-they have 5 bags. (note: the new kind of old fashioned lemon drops are neon yellow, these he has found are not the neon yellow). We head out for the last leg of the trip.
We have reserved a room this time on the east side of the Red Cross, thinking that it might be kind of fun to go to the casino for a bit and take $20 for entertainment. We get to the room. The bathroom vent fan is noisy. The air conditioner is noisy. The beds are hard as a board and the TV is about 17 inches. It was $10 cheaper than the room on the last trip. We get settled in the room and sit to watch the news. We are too tired to go to the casino. We are too tired to listen to all the noise associated with going into the casino. The bells and whistles, all those people, driving the two miles to the casino seem like too much for right now. So we go to the Arby's across the street for supper. I have a salad, Roger has a beef sandwich combo. It is not great food, but it is food and we go back to the motel. And we watch Eureka, The Closer, and Alphas.
And we shut the tv off and the lights and it is pitch black and neither one of us can see anything. So I turn on the noisy bathroom fan/light and shut the door and at least we can see the light from under the door. So we are trying to sleep with the noisy a/c, the noisy fan/light, and slamming doors noise from the hall way.
We sleep.
A little.
At 4:30 am Roger decides we should just get up and we turn on the TV watch some news, find a radio talk show on TV, real nice show not like the weirdo tv radio talk show.
At 6 am I head down to get some coffee, their continential breakfast doesn't start until 6:30 am but they do have one of those fancy thermos thingys with the pump on it, so I get two tiny stryofoam cups of coffee to take upstairs in the elevator.
I get to the room and the coffee is lukewarm. Lukewarm coffee is not good first thing in the morning.
So we decide to pack up and go out for breakfast.
there is a Waffle house near the Red Cross so we head there.
We find the Waffle house but there is no left hand turn lane to get there, but there is one about 1/2 block and I tell Roger to hang on and drive into the oncoming traffic really fast to cut into the waffle house. by the way, there was no oncoming traffic, nor was there any traffic behind me, but it sounded more exciting.
We order and eat at the Waffle house and they have hot coffee and the waitress keeps the cup filled and it was food to fill our tummies.
We leave to go to the Red Cross (it is only a couple of blocks) and it is 7:10.
Our appointment is for 8:30 but we go ahead and go in.
The night security guard goes back to tell the nurse we are here, returns to let us know she's still getting ready.
We are okay with that we are really early.
The security guard engages us in converstation, places to go in Tulsa, how big the city is these days, wildlife around the city. He's nice.
8:00 the nurse comes out to get us.
Yeah! It is nurse Amy again. She did the first leukaphresis and she is a wonderful nurse.
She gets started making Roger comfy and starts the plugging him into the white blood cell sucking machine.
I go get coffee (it is hot and fresh), and go pick out a movie, John Wayne in "the horse soldiers" and return to the room.
Amy is having trouble getting the port cleared.
Apparently the port shouldn't be used to draw blood for the blood tests, and really not for the infusion. That is unless the nurse who's doing the drawing or infusion knows how to put the right stuff in the port .
Well, that is partly our fault for letting the nurse on Friday use it to draw blood for his lab work at the oncologist. She put the wrong type of hepron in the port.
So, it took Amy about 20 minutes to get the port cleaned out and ready for the blood sucking machine.
But she took care of it and gave me instructions to give to the nurse on Friday for the infusion.
and she was real nice about the whole thing to us, not so kind to the nurses who did this.
And the leukaphresis took exactly 3 hours, and Roger did great. There were no chills this time, and he only had tums once (to replace calcium). I'd given him calcium chews the evening before and at breakfast. And I did medicate him with pain and anxiety meds.
And around noon we headed out.
Roger asks "Where do you want to go eat?"
knowing, as I do, that this is a trick question, I suggest the Las Palamas on the way home on the right side of the road.
And we stopped for lunch.
And arrived back home about 4.
and we were tired, Roger more so.
and I slept good,
Roger not as much, he has to get up several times for the bathroom,
but it was good to be sleeping back in our own bed.
and we decide to spend the $10 extra bucks for the nice motel room with the breakfast on the next and hopefully the last trip.
Tuesday, September 13, 2011
Round 2 begins
We are both very tired, but we are home, and we are happy to be home.
Roger is fatigued, I am exhausted. We will both be taking medication to sleep tonight.
leukaphresis went well, problem with port to start. No side effects except fatigue, this is good.
Play by play will have to come later, too tired to post, blog, whatever you want to call it.
Roger is fatigued, I am exhausted. We will both be taking medication to sleep tonight.
leukaphresis went well, problem with port to start. No side effects except fatigue, this is good.
Play by play will have to come later, too tired to post, blog, whatever you want to call it.
Friday, September 9, 2011
Friday September 9 2011
Today was a follow-up visit with oncologist.
God bless the case manager!
Work this morning for Pat, cleaning a house with a friend who helps with this house.
At 1:40 the lady we are cleaning for asks
won't Roger be getting worried, shouldn't you be leaving?
At 1:40:15 Roger calls the house I am working at
lady answers the phone and the next thing I hear is
Well, Hello, Roger
and she hands me the phone, lady and husband laugh
I tell Roger I am wrapping it up and will be home shortly
I only clean houses for wonderful people.
I go home, change clothes (so I don't look like I just got off the wagon train)
and we head to the oncologist's office.
Roger checks in at first floor desk, it is 3:00, appt is for 3:30
they need lab work so we go sit in the lab waiting area
we sit, Roger waits, I go get coffee (this office has a coffee shop)
nurse calls Roger while I am waiting for the coffee tree to grow beans
nurse sees Roger's port,(he has a dual port that most nurses recoginze as a dialysis port) and Roger asks if she can just take the blood sample from the port
yes
nurse asks ROGER if it matters which port she takes the blood from
I wonder if a nurse should know this and shouldn't a nurse who draws blood on a daily basis know this?
nurse gets blood samples and Roger is okay
I am happy about that
We head upstairs, we check in
we wait
nurse calls us back, weighs Roger in at 164 (we figure he is 166 since they are about 2 pounds off from other offices)
nurse takes vitals, takes us back to exam room
nurse asks nurse questions
Roger answers, we ask questions from our list (medications from urologist, dressing needs changed on port, new patient kit he's never received, chemo classes)
nurse says the doctor's nurse will be in shortly and she will help us
nurse leaves
we wait
next nurse comes in
asks nurse questions, we ask questions from our list
nurse says the doctor will be in shortly and he will help us
nurse leaves
we wait
doctor comes in, asks doctor questions
doctor asks if we have quetions, we ask questions from our list
doctor answers questions expect he doesn't know about the new patient kit or if we need to go to chemo classes since the provenge thing isn't really chemo, and Roger has not had any bad side effects
Doc is exicted about Provenge treatment, yes we are the first in northwest Arkansas and probably in Arkansas, and says the whole clinic is excited.
Doc is exceptionally nice, and looks to be about 20 (we know he is not)
Nice docs are hard to find these days, bedside manners are seemingly a thing of the past
Doc writes orders for prescriptions, Lupron shot, port dressing
and we are on our way
we take paper work to 2nd floor check out desk
Receptionist can't figure out orders the doc has written,
another receptionist takes the orders back to the doc
1st receptionist is trying to figure out how to schedule the Provenge infusion for next Friday.
so
I explain it as best I can, it has to correlate with the provenge delivery, receptionist is more confused,
so
I explain just schedule it the same time as the 1st provenge infusion, since that is the schedule Dendreon company gave us
and 2nd receptionist returns with orders the nurse can hopefully understand
and we are told to wait
over there is fine
and
we wait
and wait some some more
nurse calls Roger back,
asks why he has a dialysis port
Roger explains Provenge and leukaphresis
nurse changes dressing on port
I ask if the dressing on the neck entry point can be changed
she takes the gauze off the neck spot and we (the nurse and I) can see the awesome job the surgeon did on the incision point where the cath goes down to the heart and you can't even tell there was an incision.
and the nurse asks if it would be okay just to put a band aid on it.
I say I don't know but it looks like that is all it needs
so
nurse puts a bandaid on it
then nurse gets Lupron shot ready, has to shake it up
and gives Roger his shot in his left hip
since Roger and I think the last one was in his right hip
and we are ready to go
eat
Where should we go?
and Roger suggests the barbeque place I suggested the other day
and although this place has the best potatoe salad ever,
the roll is cold
and Roger is dismayed that he's paid $20 for us to eat and he gets a cold roll.
and we head home
to rest up this weekend
for the 2nd round which will begin Monday afternoon as we head back to Tulsa to spend the night at a motel so we are close to the Red Cross Tuesday morning.
God bless the case manager!
Work this morning for Pat, cleaning a house with a friend who helps with this house.
At 1:40 the lady we are cleaning for asks
won't Roger be getting worried, shouldn't you be leaving?
At 1:40:15 Roger calls the house I am working at
lady answers the phone and the next thing I hear is
Well, Hello, Roger
and she hands me the phone, lady and husband laugh
I tell Roger I am wrapping it up and will be home shortly
I only clean houses for wonderful people.
I go home, change clothes (so I don't look like I just got off the wagon train)
and we head to the oncologist's office.
Roger checks in at first floor desk, it is 3:00, appt is for 3:30
they need lab work so we go sit in the lab waiting area
we sit, Roger waits, I go get coffee (this office has a coffee shop)
nurse calls Roger while I am waiting for the coffee tree to grow beans
nurse sees Roger's port,(he has a dual port that most nurses recoginze as a dialysis port) and Roger asks if she can just take the blood sample from the port
yes
nurse asks ROGER if it matters which port she takes the blood from
I wonder if a nurse should know this and shouldn't a nurse who draws blood on a daily basis know this?
nurse gets blood samples and Roger is okay
I am happy about that
We head upstairs, we check in
we wait
nurse calls us back, weighs Roger in at 164 (we figure he is 166 since they are about 2 pounds off from other offices)
nurse takes vitals, takes us back to exam room
nurse asks nurse questions
Roger answers, we ask questions from our list (medications from urologist, dressing needs changed on port, new patient kit he's never received, chemo classes)
nurse says the doctor's nurse will be in shortly and she will help us
nurse leaves
we wait
next nurse comes in
asks nurse questions, we ask questions from our list
nurse says the doctor will be in shortly and he will help us
nurse leaves
we wait
doctor comes in, asks doctor questions
doctor asks if we have quetions, we ask questions from our list
doctor answers questions expect he doesn't know about the new patient kit or if we need to go to chemo classes since the provenge thing isn't really chemo, and Roger has not had any bad side effects
Doc is exicted about Provenge treatment, yes we are the first in northwest Arkansas and probably in Arkansas, and says the whole clinic is excited.
Doc is exceptionally nice, and looks to be about 20 (we know he is not)
Nice docs are hard to find these days, bedside manners are seemingly a thing of the past
Doc writes orders for prescriptions, Lupron shot, port dressing
and we are on our way
we take paper work to 2nd floor check out desk
Receptionist can't figure out orders the doc has written,
another receptionist takes the orders back to the doc
1st receptionist is trying to figure out how to schedule the Provenge infusion for next Friday.
so
I explain it as best I can, it has to correlate with the provenge delivery, receptionist is more confused,
so
I explain just schedule it the same time as the 1st provenge infusion, since that is the schedule Dendreon company gave us
and 2nd receptionist returns with orders the nurse can hopefully understand
and we are told to wait
over there is fine
and
we wait
and wait some some more
nurse calls Roger back,
asks why he has a dialysis port
Roger explains Provenge and leukaphresis
nurse changes dressing on port
I ask if the dressing on the neck entry point can be changed
she takes the gauze off the neck spot and we (the nurse and I) can see the awesome job the surgeon did on the incision point where the cath goes down to the heart and you can't even tell there was an incision.
and the nurse asks if it would be okay just to put a band aid on it.
I say I don't know but it looks like that is all it needs
so
nurse puts a bandaid on it
then nurse gets Lupron shot ready, has to shake it up
and gives Roger his shot in his left hip
since Roger and I think the last one was in his right hip
and we are ready to go
eat
Where should we go?
and Roger suggests the barbeque place I suggested the other day
and although this place has the best potatoe salad ever,
the roll is cold
and Roger is dismayed that he's paid $20 for us to eat and he gets a cold roll.
and we head home
to rest up this weekend
for the 2nd round which will begin Monday afternoon as we head back to Tulsa to spend the night at a motel so we are close to the Red Cross Tuesday morning.
September 8 Thursday 2011
Thursday September 8 2011
Roger's appointment with urologist at 2:30pm
Don't remember if I mentioned the case manager, but she is taking care of all the phone calls to make sure the meds are where they need to be when Roger needs them,
making sure the docs are where they should be, and know what they are supposed to know to deal with Roger.
So today's appointment with the urologist is the last visit for prostate cancer, the urologist is now the secondary specialty doc, now for urology problems only.
It is a nice visit.
Roger checks in and we sit in the waiting room.
I know in all probability we will be there a while.
So I ask Roger
"Where do you want to eat?"
he laughs
says "Where do YOU want to eat?"
I say "Don't even ask"
and we talk about the places close by and decide on Steak and Shake again, we are becoming regulars there at Happy Hour (2-4 pm M-F) 1/2 price drinks including shakes.
1/2 price of course, unless they charge you for two unsweetened ice teas when you only order one, and they only bring you one (but I digress, and they haven't actually over charged us since the first time)
Soon, the nurse calls Roger back. They don't take his weight here, just hand him a cup.
Roger apologizes for yelling at her back in April over a medication problem. She accepts his apology and says it happens.
She points to the exam room for me as Roger heads for the restroom.
I go sit in the exam room, Roger comes in and sits, the nurse follows him in.
She asks the nurse questions.
then Roger explains why we are here:
to let Doc know he won't be back unless his speciality is needed for symptoms that occur urologically, that all the prostate cancer problems will be handled by the oncologist.
Ok, the doc will be in soon.
and
the doc is in soon and Roger tells the doc the same thing he told the nurse.
Then Roger looks and the doc and says
"thanks for keeping me alive the past 9 years" Roger has tears in his eyes, and his voice is shaky.
He shakes doc's hand and the doc shakes my hand and he says he will be here if needed.
And so we leave the urologist's office (of course, with copayment and paper work in hand)
This last regular visit occurred because our case manager arranged for the hormone shot and prescriptions from the urologist to be dispensed at the oncologist. And we are happy about the case manager, we are tickled pink.
I am jumping for joy, it takes a huge load off (making calls between docs, nurses, hospitals, surgeons, prescription drug company and health insurance company can be time consuming (sometimes 4 hours in a day)and frustrating .
Roger's appointment with urologist at 2:30pm
Don't remember if I mentioned the case manager, but she is taking care of all the phone calls to make sure the meds are where they need to be when Roger needs them,
making sure the docs are where they should be, and know what they are supposed to know to deal with Roger.
So today's appointment with the urologist is the last visit for prostate cancer, the urologist is now the secondary specialty doc, now for urology problems only.
It is a nice visit.
Roger checks in and we sit in the waiting room.
I know in all probability we will be there a while.
So I ask Roger
"Where do you want to eat?"
he laughs
says "Where do YOU want to eat?"
I say "Don't even ask"
and we talk about the places close by and decide on Steak and Shake again, we are becoming regulars there at Happy Hour (2-4 pm M-F) 1/2 price drinks including shakes.
1/2 price of course, unless they charge you for two unsweetened ice teas when you only order one, and they only bring you one (but I digress, and they haven't actually over charged us since the first time)
Soon, the nurse calls Roger back. They don't take his weight here, just hand him a cup.
Roger apologizes for yelling at her back in April over a medication problem. She accepts his apology and says it happens.
She points to the exam room for me as Roger heads for the restroom.
I go sit in the exam room, Roger comes in and sits, the nurse follows him in.
She asks the nurse questions.
then Roger explains why we are here:
to let Doc know he won't be back unless his speciality is needed for symptoms that occur urologically, that all the prostate cancer problems will be handled by the oncologist.
Ok, the doc will be in soon.
and
the doc is in soon and Roger tells the doc the same thing he told the nurse.
Then Roger looks and the doc and says
"thanks for keeping me alive the past 9 years" Roger has tears in his eyes, and his voice is shaky.
He shakes doc's hand and the doc shakes my hand and he says he will be here if needed.
And so we leave the urologist's office (of course, with copayment and paper work in hand)
This last regular visit occurred because our case manager arranged for the hormone shot and prescriptions from the urologist to be dispensed at the oncologist. And we are happy about the case manager, we are tickled pink.
I am jumping for joy, it takes a huge load off (making calls between docs, nurses, hospitals, surgeons, prescription drug company and health insurance company can be time consuming (sometimes 4 hours in a day)and frustrating .
Thursday, September 8, 2011
The Scoop
Provenge is provided by Dendreon and the website the best place to go. The leukaphresis and infusion have to take place at different facilities, thus going to two places for the two procedures. We are doing okay, Insurance is paying for it! . It is a $93,000 procedure. Blood is transported by independent courier, that has to be a considerable cost in itself. The process is much like how vaccines are made, this is just individualized. The process has been used for leukemia very successfully, for prostate cancer not as successful, but does improve survival time. Some of the clinical trial patients are still around 5 years later. Average is 2 1/2 years. Roger had no side effects except fatigue, thus far. Considering that he had the surgery on Monday (Rogers) leukaphresis on Tuesday (Tulsa), and infusion on Friday (Fayetteville) with all the travelling, I am more tired than Roger. He's doing better than I am right now, I'm exhausted!
Roger was diagnosed in 2001, and had exhausted most options for treatment. (Hormone Therapy and Radiation) So this was happy news not just for finding a treatment, but for his mental well-being. The PSA was doubling every 2 weeks in April, and although he would not admit, he was very depressed, and for good reason, when it is doubling that fast, it doesn't take long for the cancer to get into the bones. The only other treatment at this point after Provenge is chemotherapy Docetaxel ( or something close to that). that's it. Provenge has also proved to make other therapies more effective, so if Provenge does not slow the cancer, the chances of chemo working are greater. Roger has already developed problems with urination, made somewhat better with Flomax, none of this is good but his spirits are good! and if Provenge does nothing, it has pumped Roger full of hope. Our house is pretty much a pharmacy right now. We have some very useful drugs and a lot of them. We also have a prescription drug plan, although we spend more on drugs than doc visits. Wow, this is probably more than you wanted to know. Thanks for prayers! If there's any other questions on the Provenge adventure that I can answer, or if anyone wants to know more about it I will be happy to answer more questions.
A good ending to a hetic week September 2, 2011
 |
| $31,000 worth of blood |
Friday Sept 2, 2011
This has been a very long week.
I ironed today. Ironing is not something done around here at the Bell House, no, not much at all. I believe in Perma-Press, and clothes that come out of the dryer semi-wrinkle free.
But...
today we were pioneers.
and I thought we should look snappy, not like we had just got off the wagon train.
Well, snappier than we usually look. Ironing adds a nice touch.
We were spoiled in Tulsa at the American Red Cross.
12:40 pm
We arrive at Oncology . Check in downstairs, check in upstairs. Wait a few minutes, and are ushered into the Chemotherapy Suite.
A large room with a large circular island of nurses and receptionist. Around the perimeter of the room are recliners, desk chairs and those doctor stool/seats that twirl and roll. And a lot of those IV hanger things on wheels. There are also several TVs suspended from the ceiling with no sound (they have headphones for you.).
Nurse Linda asks where we would like to sit. And Roger just picks the closest recliner. It is back against the island of nurses facing the perimeter. The nurse checks his vitals, asks if we have had the chemo classes, asks if we received a new patient packet. (no we haven't to both questions) Roger asks nurse if she has been in on the Provenge procedure.
Oh sure, we've had a couple
Roger and I look at one another with quizical skepticism.
Soon Nurse Jennifer whisks away Nurse Linda.
Roger asks where Nurse Diane is.
(the nurse the case manager said would be in charge)
Nurse Jennifer mumbles something about how something wouldn't be fair for Diane.
Roger asks about the Dendreon Rep.
Yes, he is here, Matt,
Jennifer plugs Roger into a big bag of bendryl, and gives him to tylenol to take.
Matt is standing by door about 10 feet away and I motion for him to come over.
Introductions are made. I hand him the broken radio thingy we received in the backpack and Roger speaks up.
We would like to trade the radio in
for a Volkswagen
Matt laughs
We talk about how the backpack was a nice touch
he says yes, some of the patients did not receive them
I say we are very happy we got one
he leaves, because a man (who turns out to be the pharmacist) walks in the door with a big box. This box is probably 24 x24x24
It is a big box and it has Roger's new and improved blood in it.
the box is taken to a room off to the side where lots of people gather around (not Roger and I but there is a window where we can see the goings on) and the box is opened and a pretty pink bag of blood is revealed. It is smoosed up like we were told, put into a microwave looking machine twice, and everyone seems interested. Finally, Jennifer brings the blood out and plugs it into Roger. She has to calibrate the flow manually. The special blood is not allowed to travel though the machine that usually calibrates the flow. It is special blood, it is a pretty pastel pink, it is 250 ml and it cost $30,000. I take a picture of the front and back sides of the bag and of Roger. (The pictures are posted on Facebook) But most importantly, it has given Roger hope. Even though he is tired from this week, it has given me Roger back. It has given me the "carpe diem" Roger that I met 8 years ago.
Jennifer checks on us every 15 minutes, it takes 1 hour for the blood to flow back into Roger.
that's what? $500 a second
Roger describes his new blood as little pac men munching on his cancer. I think it is cute, but please don't tell Roger I said the cute part.
Nurse unplugs Roger and says we need to wait 30 minutes, and she will take his vitals and if everything is okay, we can leave.
Everything is okay and we leave.
It is 3:00
Roger says lets go eat
Where would I like to go?
I suggest one of the many restaurants by the mall
Roger says lets go to the steak and shake in Rogers
I say to Roger
Don't ask questions you don't want an answer to
(refering to the question of where I wanted to eat)
We laugh.
Roger's laugh is priceless.
We eat at the Steak and Shake and get the manager for a waiter. He doesn't ask what flavor when Roger orders his vanilla shake. He is a better waiter than our waitress the other day
Roger comments.
We eat and head home.
Roger sits down on couch and is fast asleep in 5 minutes.
Over all it was a good day.
It is good to be home. It is good this week is done.
Love to all,
Pat
6 days til Provenge
Hi, me again, Pat that is.
Have to cross the bridge with the troll under it Thursday.
Tomorrow we go a frolickin'. Roger has a consult with a surgeon to see if he will need a port installed for the Provenge. Since his "track" record with the phlembotomist is not the best and the veins in his arms have been put through a whole lot of puncturing the last ten years,(He's had problems with nurses being able to draw blood) I suppose that means the port would be put in Friday or Monday, the first phresis is scheduled for Tuesday. gee, this just gets more and more involved
More tomorrow, love to all
Pat
Great Aunt "Cissy" to James Thomas Johnson
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
Nurses, Surgeons, and Hospitals, OH MY
.
Saturday August 27
Mellow day followed by poker with friends, Pat wins! what's $3 amongst friends.
Sunday August 28busy day getting lists of what we need and what I have to do for Monday's adventures. Need to get up at 4:30 amgo to bed at 8pmphone rings at 9pmfriend is calling to wish Roger wellthat's nicenow must try to get back to sleepRoger's ambien kicks in Roger snores.happy he is sleepingsad that I am notwatch reruns of House Hunter's internationalfall asleep on couchwake up 2 amgo back to bedfall asleepalarm goes off at 4:19am, I hit snoozealarm goes off again, I reset alarm for 5:19 amalarm goes off, Roger looks at time"how come its so late, we gotta get moving"I say nothingRoger grumbles, grumbles, grumblesI think about calling Becky and telling her to come pick up Roger, I am going to town to rent a truck and move outI don'tRoger continues grumblingPat contiunes to get ready for hospital, while comtemplating his early demise, decide he needs love anyway and say nothingcomtemplating his demise is too sad, and I almost start to cry and realize I have too much to do andRoger is ready to go and it is5:50amwe need to be at hospital by 6:30since this surgery isn't going to take long, I figure we need to come back to house anyway and we take off for hospital.arrive at hospital at 6:10amparking is convinently closeRoger grumbles he can walkI say nothing, park and we walk togetherup to the second floor,1st desk tells us to go to 2nd desk2nd desk shows us to the ambulatory surgery area (or something like that)Roger's special place is area 17Roger weighs in166 same as Friday at the hospitalgets his hospital bracelet, has a bar code, Roger is now scanable, I am given a pagerwalk to area 17, gets in hospital gown, nurse gets iv in for fluids and antibiotics, no problemmy faith in nurses is renewed, (I called to talk to son and daughter-in-law (Noah and Amy) on Sunday relay preious weeks adventures, Amy reassures me clinc nurses lose touch with things hospital nurses don't, Amy's sharp, love her.Roger is ready. It is 7:00amwe waitnurse checks on RogerHow much longer?Surgery is scheduled for 8:30.I am just sooooooo happy we arrived on timewe waitwe waitthey give Roger hydrocodoneTHANK YOU!we waitRoger mellows outNurse comes to take Roger upstairs to surgery prepshe scans himI go with them upstairs, in an elevator THANK YOU! (for the elevator that is)We go to a surgery waiting area (not sure where we were before, this is just closer to OR)Anatheisiologist comes to talk with us, doc comes to talk to us, nurse scans Roger, and shows me where to waitSurgery Waiting Areasmall place, lots of peopleI go downstairs to find breakfasteggs, country fries, 2 pieces bacon, I find salsa, I am thankful for salsaget coffee tooeat, head back to 3rd floor Surgery waiting area, small room, I find a chairI am sitting across from 2 women speaking a foreign language and it is loud and non-stopit is driving me crazyI step outside the door stand in the hall, leaning against the wall. I am across from a lady adminstrator sitting in a glassed in offficeshe steps out, asks if I would like to sit in her officeI say thank you yesI sit silently in her office, I enjoy the quiet for about 10 minutes, see the foreign people leave,I thank the lady for the silence and go back to the Surgery Waiting AreaIt is quiet, not silent but more quiet than it wasHouse Hunters is on the TVI see the computer screen on the wall that shows where the scanable people are, they have different colors when they are at different areasRoger is #10484 or something like thatRoger is now in surgery, it is 9:00amI wait, 9:30 nurse calls on phone they are finishing up, Roger's color changes on the computer screen,, the bright green color means he is being moved to post op.I wait, 10:00 am the doc comes into the Surgery Waiting Area, wants to talk to meeverything went well, there was very little bleeding, Roger will be in post op an hourI am sent down to 2nd floor area 17. It is sometime around 11 amRoger arrives at area 17, woozy but okayWe wait.after 30 minutes nurse asks if Roger would like something for painyes, he's a 6 (on the pain scale of 10)nurse gives hydrocodonetells us we will have to wait another hour while they monitor him after giving the hydrocodonewe waitnurse asks if Roger needs to use bathroomyeshe goescomes backnurse calls pharmacy to get Roger a suppy of hydrocodonenurse tells Roger it is about time to check out and it is time to get dressedRoger gets dressed, gets in wheelchair, nurse, me and Roger in wheelchair walk to side entranceI walk fast to go get car (remember, I was able to park close)get car, get car started, get air conditioner goingpick up Rogerit is 1 pmwe head home
It is 1:30 pm when we get home and I end here, this is getting lengthy and we still have to drive to Tulsa, since we have reserved a hotel room, so we don't have to get up again at an ungodly hour to be in Tulsa at 8:30 am Tuesday
soyesthere is more to follow
August 26, 2011
So I had a beer.
August 26, 2011
8:00 am call in for a refill for Roger's ambien, after pressing all the approiate buttons, get a pick-up time of after 3:00pm at Wal-Mart Pharmacy (figure we'll pick it up on our way home from Mercy)
Worked at one of my houses 9 am-noon (its a house I clean with a friend)
12:30 arrive home, take quick shower, take my meds that I forgot this morning
12:50 leave for Mercy Medical Center with Roger for pre-op at 1:30.
1:10 arrive at mercy early so we can get the paper work filled out.
ah, ha all Roger has to do is sign the HIPPA papers
secretary takes Roger to exam room,leave Roger with his personalized list of all his medications, I leave to go to Debbie's Pharmacy to pick up prescriptions from oncologist
prescription is not there, has not been called in.
call Oncologist, get voice mail for nurse
leave message
go back to Mercy to check on Roger
call Becky to update her on Roger's schedule, Roger walks into waiting area, hang up on Becky before it goes to voice mail,
Roger still needs the x-ray
don't even sit down when the radiology tech comes to get Roger
tech lets me go back with him
lets me watch as the x-ray is scanned into computer
happy I don't have a clue as to what is on the x-ray
I believe sometimes ignorance is bliss
only sometimes, this is one
x-rays are done
we leave
it is
2:30 pm I drive Roger to Debbie's pharmacy
prescriptions still not called in
2:40 pm I drive Roger to Oncology
talk to receptionist, she directs me to the pharmacy there in the clinic
4 people wating, we wait, finally our turn to speak,
do they have the prescription?
no
do they know or can they find what we need to get these two scripts
yes, they call the phone nurse (I didn't know phones needed nurses)
the phone nurse is on the phone with Debbies pharmacy
we leave, we drive to Debbies
the pharmacy techs and pharmacist are trying to hide laughter and let us in on the funny
just got off phone with phone nurse
have to clarify one of the doses on prescription
we wait
Roger goes to sit outside in car
I wati inside
phone nurse finally calls back with dose, and instructions
this is the funny---phone nurse says the instructions are to use one spray in each nostril, hee, hee this is a pill for flomax, not the flonase spray for allergies
I see the humor, a good medical story to tell to my daughter
sad that incologist cannot afford real nurses and must rely on phone nurses. :)
go to eat burgers at steak and shake waitress asked what we would like to drink, I say unsweetened ice tea, Roger says a vanilla shake
waitress asks what flavor?
Roger replies Vanilla
we laugh
good meal but a lot of fat
waitress charges us for two ice teas, and a vanilla shake
I point out the discrepency to the waitress, she corrects the bill
we leave 10% tip
Roger pay the bill, we drive to Wal-Mart to pick up prescription for ambien
Drive to the drive-thru, wait for someone in big white truck who doesn't seem to understand, there's a problem, I press the help button ( yes, I need help)
we wait
I turn off the car, roll down the windows, it is only 93, its okay
we wait
Truck leaves, I press the help button again
we wait
Pharm tech resonds how can I help you
I need a prescription for Roger give his birthday
she presses buttons, picks up phone "We can't fill your prescription"
she presses buttons, picks up phone "We can't fill your prescription"
why
we can't fill it until tomorrow
YOU'VE GOT TO BE KIDDING (yes that is exactly what I said and I'm pretty sure it was somewhat loud)
I say to Roger, tomorrow is only 8 hours away, this is ridiculous
we drive away, head home
arrive home about 5pm
I say to Roger, I'm gonna have a beer
We make plans to play cards with friends tomorrow night
August 24 New Updates
Let's see, I believe it is Friday, so I need to start with our adventures with Thursday.
We are now involved in what seems to be a three ring circus, and it is hard to keep up with all the exciting acts, so bear with me.
Thursday August 25, oh no wait.
need to go back to Wednesday.
Wednesday August 24
10:42 am Receive call from oncologist-they are scheduling an appointment with surgeon to evaluate whether or not he should have a catheter/port for the leukaphressis (footnote here: most nurses have trouble finding and "getting" a good vein, he's been punctured every month for the last 6 months and every 3 months for the last 10 years, my note: duh, is there even a question here)
11:26 am Receive call from surgeon's office, they have scheduled a consult with surgeon at 1:00pm Thursday, are aware Roger has an appointment with oncologist at 2:00 and are SURE we will have plenty of time since the surgeon's office is only 1/2 block from the oncology office. (my note: they (the surgeion and oncologist) live in an alternate universe)
12:28 pm Receive call from oncologist- Roger has his consult with the surgeion at 9:00 am Thursday. I tell the person on the line, "The surgeion just called an hour ago and told us the appointment was made for 1:00 pm" the person on the line says, I will call you right back. Bye (my note: like I said the medical profession lives in an alternate universe)
12:32 pm (GREAT BALLS O' FIRE) Receive call from oncologist, "yes your appointment is for 1:00 pm Thursday"
Thursday August 25
12:45 pm Arrive at surgeon's office early so Pat can fill out all the paper work, and Roger can sign.
1:00 pm nurse calls Roger he weighs in at 167. nurse takes us to exam room 4 except opps it is actually 9. Nurse asks nurse questions, leaves telling us the doc will be with us shortly (my note: as I have said before ....)
1:30 pm a different nurse comes in asks nurse questions-same as previous nurse, leaves telling us doc will be with us shortly. uh, huh
1:45 pm Doc comes in pokes around, yes we need to install a port asks "When is this procedure?" Tuesday "Oh, my" says the doc. "That's short notice, let me get with the hospital and see what the schedule is for an OR" Doc leaves. Doc and nurses are done with Roger, Roger leaves to walk over to Oncologist. I stay to wait for the schedule for pre-op and the operation, and pay the co-pay pre-op is scheduled for 1:30 tomorrow, surgery for 6:30 am Monday.
2:00 Roger arrives at the Oncologist and checks in with front desk
2:15 Pat arrives
2:30 Nurse from the lab peaks her head out and asks if we are checked in, ask for name, says someone will with Roger shortly
3:00 Call Roger back for blood draw. Hits vein on third try
3:05 We walk upstairs to check in for oncologist appointment
3:15 Nurse calls for Roger, he weighs in at 165. (gee, I wish I could lose 2 pounds by walking 1/2 block) Nurse takes us to exam room (no number, new offices) nurse asks nurse questions, says doc will be in shortly
4:05 Doc walks in, asks doc questions , talks about new prescription for urination (Flomax) he is currently talking Uraloxatol and doesn't seem to be helping much anymore, I talk to doc about valium for Roger for the ride to Tulsa and for before the procedure. Doc says okay to both and will call it in to pharmacy, " Which pharmacy do you use?" Debbie's Doc answers Pat and Rogers questions, we all shake hands, we all proceed to leave
"oh don't forget your paper work to check out" we take the paper work and proceed to checkout
4:50 approach check out desk, we need to make appointment for injection and follow-up
receptionist has no idea how to schedule the Provenge injection. I show her the paper work from Dendron which shows the dates for leukaphresis & infusion. I explain infusion must occur within 6 hours of delivery, delivery is scheduled for 12:00 noon at the Fayetteville office. Receptionist becomes further confused must call doc and nurse to figure this out. Then must call Fayetteville office to check on whether the Provenge will be delivered to Rogers or Fayetteville office. Fayetteville office it is! Sept 2, 1:00 pm, Follow-up Sept 9, 3:15
5:00 stop to get fast food at Long John Silvers'
5:30 Home
To be continued
I'd bring you up to Frida;y, but Friday turned out to be just as much fun!
and its taken be almost 2 hours to write in between phone calls
and I feel you need the whole story on Friday's fun
Love to all,
Pat
August 17, 2011 Roger's upcoming treatment
.
Roger is now seeing the oncologist once a month, still seeing the urologist (who has been the primary physician since diagnosis in 2001), and his regular MD whenever needed. I am trying to coordinate all these doctors, so everyone knows what the others are doing. Unfortunately, I've had practice doing this, but I am hoping this works to Roger's advantage. So I am trying to hold it all together, some days I can't hold myself together.
Roger starts the 6 week Provenge journey on August 30. This will entail travelling to the American Red Cross in Tulsa for blood collection, for 3 or 4 hours Roger will be hooked up with a machine that will extract blood, separate some white blood cells, then return the plasma back to him. The white blood cells are sent to a magic castle where magicians add a magic potion. The magic blood is then sent to the Oncology office in Rogers, and put back in Roger in about 2 hours :)
That is the short story. and it sounds better than leukaphresis and infusion.
A lot of scary monsters show up along the way, in the form of side effects, not just the infusion, but from the leukaphresis as well..
I don't want to continue the story because I can't fight the troll under the bridge in three billy goats gruff until I see them. :(
The whole story can be found by googling or binging Provenge.
Just trying to add a little humor, everything is quite complicated.
Anxiety and worry came to the door today by way of the brown UPS truck. It was a care package for Provenge patients. A backpack on wheels with a stainless steel water bottle, puzzle books, a $1 radio that doesn't seem to work, pen and pencil set, instant lemonade mix, and a book explaining more throughly what is going to happen before, during, and after each of the extractions and infusions and all the things that can happen. (The backpack is just awesome) 98% experience side effects, 23% bad bad side effects. The backpack like I said is really cool, but brought with it the reality of the situation.
I wrote that just for a heads up. I won't think about it, as I mentioned, until the time comes to deal with it.
This is day to day. I am absolutely estatic this has given Roger hope, and a more positive outlook. We go walking at the Adult Wellness Center ( a fitness center for us old folks over 50) in Rogers 3 days a week. Roger loves it, and he even went there ALONE, on Tuesday! (while I was working). He hasn't gotten out much since retirement, and less so as time has gone on. He was getting very down after the setback in April. So his outlook is much improved for the goood.
Sincere regards and Love to you all,
Pat (the one with a brand new great nephew James Thomas Johnson born August 16)
oh, and of course the one who loves Roger!
March/April 2011
March, the month things started to take a turn for the worse. The PSA was begining to double every 6 months and the urologist had just about exhausted the options from his speciality. The urologist put Roger back on casodex (Roger was on a different anti-androgen for about a year for a break from casodex) Roger was refered to an oncologist.
Appointment was made and we met the new doc on the scene. Older gentleman, wore a bow tie. Spent more time looking at the computer and hollering (let me insert definition here: less vocal than yelling, I believe hollering in Arkansas talk can refer to a level of sound or the place you live, i.e. I live in the holler :) at the nurses to look up stuff on the computer, as well. Near the end of the visit, doc recommended/prescribed a round of ketoconzole (an anti-fungal which has a side effect of lowering testerone-the food of the prostate cancer)prescription. We walk out of the office with a prescription for 30 days. At the same time my daughter, living in Boston, MA, is having a wedding shower, and arranges for me to visit her so I can attend. Her shower is on a weekend and I fly up there for 3 days--had a lovely time, gave her two of her grandmother & great grand mothers quilts.
I return from Boston and the prescription has not arrived, some mix up with getting the prescription called in or from the prescription drug plan we have or both. (note: it is a three ring circus out there in health care land)
While the details at this time are unclear, I wasn't keeping notes daily like I am now, the ketoconzole becomes available two days before I leave for my daughter's wedding (April 22, 2011) at Loreto, Mexico, out on the sea side of the california baja. I leave on the 19th to spend 6 days out there. Roger starts the keto stuff April 17. Roger is okay when I leave.
I spend six days out in the sun, enjoy the celebratory events and watch my beautiful daughter marry an outstanding young man. It was a very relaxing time. I kept in touch with Roger through daily Skypeing.
I arrive back in Tulsa (have to travel to Tulsa, tickets out of XNA were $250 more), in the midst of Monsoon season. It had started raining when I left and was still raining when I got home. As a matter of fact, the flight arrived just before a storm was moving in and I was lucky to have arrived when I did. It rained on the way home, had to stop a couple of times because the rain was so hard. It took 5 hours to make a 2 hour trip. I had to take an alternate road to get home because of flooding in Rogers on New Hope Road (the main road to get home).
I arrive home with hamburgers and fries. Roger is on the couch, happy to see me but sick as can be.
"honey, I haven't been able to eat anything since you left, I gag on every bite"
he didn't want to tell me this while I was gone,
and he had been out in the rain trying to keep the boat dock anchored.
So the last week of April is spent with doctors. First the family doctor, where he gets antibiotics and an inhaler for the bronchitis he developed while working to keep the dock in order in the rain.
Then the oncologist to see about stopping the keto crap.
But no the oncologist doesn't want him to stop the keto *$%!, instead gives him more crap for the nausea.
and the nausea meds don't help
and finally says maybe Roger should stop taking the ketoconozole
because Roger doesn't want to stop taking the drug unless the doc okays it
and finally Roger stops taking the drug
and we go back to the urologist and tell him we don't want to go back to the strange oncologist and could he refer Roger to a different oncologist
and he does
and we go to an appointment with the new oncologist and he really is new
about 3 years out of residency new and he is kind.
and Roger is much happier and has more confidence in the new doc
and all this is good news.
Appointment was made and we met the new doc on the scene. Older gentleman, wore a bow tie. Spent more time looking at the computer and hollering (let me insert definition here: less vocal than yelling, I believe hollering in Arkansas talk can refer to a level of sound or the place you live, i.e. I live in the holler :) at the nurses to look up stuff on the computer, as well. Near the end of the visit, doc recommended/prescribed a round of ketoconzole (an anti-fungal which has a side effect of lowering testerone-the food of the prostate cancer)prescription. We walk out of the office with a prescription for 30 days. At the same time my daughter, living in Boston, MA, is having a wedding shower, and arranges for me to visit her so I can attend. Her shower is on a weekend and I fly up there for 3 days--had a lovely time, gave her two of her grandmother & great grand mothers quilts.
I return from Boston and the prescription has not arrived, some mix up with getting the prescription called in or from the prescription drug plan we have or both. (note: it is a three ring circus out there in health care land)
While the details at this time are unclear, I wasn't keeping notes daily like I am now, the ketoconzole becomes available two days before I leave for my daughter's wedding (April 22, 2011) at Loreto, Mexico, out on the sea side of the california baja. I leave on the 19th to spend 6 days out there. Roger starts the keto stuff April 17. Roger is okay when I leave.
I spend six days out in the sun, enjoy the celebratory events and watch my beautiful daughter marry an outstanding young man. It was a very relaxing time. I kept in touch with Roger through daily Skypeing.
I arrive back in Tulsa (have to travel to Tulsa, tickets out of XNA were $250 more), in the midst of Monsoon season. It had started raining when I left and was still raining when I got home. As a matter of fact, the flight arrived just before a storm was moving in and I was lucky to have arrived when I did. It rained on the way home, had to stop a couple of times because the rain was so hard. It took 5 hours to make a 2 hour trip. I had to take an alternate road to get home because of flooding in Rogers on New Hope Road (the main road to get home).
I arrive home with hamburgers and fries. Roger is on the couch, happy to see me but sick as can be.
"honey, I haven't been able to eat anything since you left, I gag on every bite"
he didn't want to tell me this while I was gone,
and he had been out in the rain trying to keep the boat dock anchored.
So the last week of April is spent with doctors. First the family doctor, where he gets antibiotics and an inhaler for the bronchitis he developed while working to keep the dock in order in the rain.
Then the oncologist to see about stopping the keto crap.
But no the oncologist doesn't want him to stop the keto *$%!, instead gives him more crap for the nausea.
and the nausea meds don't help
and finally says maybe Roger should stop taking the ketoconozole
because Roger doesn't want to stop taking the drug unless the doc okays it
and finally Roger stops taking the drug
and we go back to the urologist and tell him we don't want to go back to the strange oncologist and could he refer Roger to a different oncologist
and he does
and we go to an appointment with the new oncologist and he really is new
about 3 years out of residency new and he is kind.
and Roger is much happier and has more confidence in the new doc
and all this is good news.
Wednesday, September 7, 2011
Roger, cancer, and immunotherapy: Where does it begin?
Roger, cancer, and immunotherapy: Where does it begin?: Roger was diagnosed with prostate cancer in 2001. PSA was 27. The horomone therapy worked for a while then the anti-androgen was added. I...
Where does it begin?
Roger was diagnosed with prostate cancer in 2001. PSA was 27. The horomone therapy worked for a while then the anti-androgen was added. In other words he recieved a shot of Lupron every three months, and took a casodex 50mg pill once a day. PSA had dropped to >2. He was under the care of a competent urologist, there was no oncologist on his case. This happened before I met Roger in 2003, September, no, maybe October. (Its another story for another day) Sometime around mid 2004, with a rising PSA, unsure, think it got to 4, the urologist reccommended radiation, and thus, Roger received radiation, from a lazer kind of machine, that zapped mapped areas on his body with radiation. 5 days a week for 8 weeks. The radiation really did zap the cancer, and it remained in a sloooow growth period for almost 7 years. Things changed rather quickly in 2011 when it became apparent the PSA was doubling in 6 months. And this is where this story begins.
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