Monday, September 24, 2012

Updates September 24, 2012

If you talk to Roger, he will say he is doing okay not great but okay.  And while this is true for him, I have trouble internalizing what he means by this.  That he just doesn't want to divulge much to the people who ask because he is embarrassed by the situation of being physically weakened, or maybe he believes if he says it enough it will be true.  Or maybe I'm just too close to the situation.

Wednesday will be the 3rd Taxotere (chemo) infusion.  oh, I need to back up

On September 5th, Roger received the 2nd infusion, 10 days later, on a blood lab, he had almost no white blood cells, so received a Nuepogena shot (blood booster in simplified terms), and another shot the day after.  He received one shot after the 1st infusion, two shots after the 2nd infusion.
(By the way, the second shot... we had to drive to Fayetteville, on a Saturday, game day, home game... easy getting home)

Diarrhea and hemorrhoids have gotten progressively worse over the course of his treatment.  To the point of needing to see a colon rectal specialist, which is scheduled in the first week of October.  Don't know when, but we did receive the paper work.  It is on my list of 1st priority items.

Speaking of 1st priority items, we are still waiting for urostomy supplies.  Roger cannot receive any more supplies through insurance until the urologist's office approves the order.  No orders have been approved yet, and we've received supplies since mid June.  The supply company will let orders go through without approval for 3 months at a time, so that is another thing I have on the list.  Have already called twice last week to the doc, and once to the supply place.

Sigh.....

Roger takes a nap most days, he will sleep 4-5 hours during the night and the lack of nighttime sleep catches up with him sometimes,  sometimes he takes a sleep aid during the day.  He needs help sleeping because he fights sleep like no one I've ever seen.  He will complain of being tired, and yet, move around so he won't fall asleep. And then the bleeding in the bladder has started up again.

Just a discombobulated update.  Roger can't stand to let me sleep when he is awake.
So I'm a little weary too.

Love to all

Wednesday, September 5, 2012

September 5, 2012

Roger settles in for Round 2
Roger visiting with neighbor Louis Bishop Sr. (pre-hair loss)
Today was round two of taxotere (the chemotherapy drug).  Appointment at 11:15 for lab, got right in for lab.  Phlebotomist had trouble finding a good vein, had to poke him once in each arm.  Visit with oncologist scheduled for 11:30, we saw the doc at 12:15.  Scan in August, before chemo, as a baseline, shows cancer has spread to lymph nodes in abdomen, new areas not seen in the  January/February/March or April scans.  But blood work was good for the taxotere infusion today. Roger still holding his own.  The "buzz" from the steroids has diminished, doctor explains the fatigue will likely get worse now, hair loss was earlier than most (usually occurs at/about 2nd infusion or 21 days) Roger's hair started falling out at/about day 10 after 1st infusion.  Nausea has been kept in check for the most part, some mornings he still vomits, (Roger will tell you he hasn't had much vomiting, but then I am the one who cleans it up and hands him a cool rag to wipe his face).  Doctor says if we've kept the nausea in check thus far, the pharmaceuticals we have (4 prescription and 2 over the counter) will likely still work, and likely will Not get worse.  So goes the talk with the onocologist, not great news but not horrible either. (except for the new spots of cancer).  The infusion was scheduled for 11:45 and we got in the lobby around 12:30 , and a seat .   was available by 1 pm in the treatment room.  It took 5 more punches and 3 nurses to find a vein for the IV port and the infusion finally got started by 2.  Infusion went smoothly, Roger felt more groggy than the last time (like I mentioned, the steroids are not providing the energy lift he felt at the start)  We were out by 3:30 and ate out at La Palmas before heading home.

Tuesday, August 28, 2012

As the chemo goes, so goes Roger

Roger sports one of his new do rags
Hair started falling out in shower today, and Roger insisted on going to his barber, Gloria to get it ALL shaved off.  As will all things Roger, it needed to be done yesterday, so a trip to town was the order of the day.  Overall, he has a good level of energy, but doesn't sleep more than 4 or 5 hours at a time.  Roger helped run the wood splitter this morning, splitting up the wood from a dead tree on the property.  (Not to worry, he has a friend doing most of the work).
Roger at the barbershop (Gloria has been his barber for more than 20 years)


Monday, August 20, 2012

PCRI | Prostate Cancer Research Institute

PCRI | Prostate Cancer Research Institute:

'via Blog this'
This link should take you to the informational page for docetaxel-the treatment Roger is currently receiving.  First infusion August 15, 2012.  

Friday, August 10, 2012

today's appointment

Apparently, there was a lot of miscommunication going on in the doctor's  office, and apparently someone no longer works at the oncologist's in the scheduling department.  They know now Roger is not in hospice, and we did visit with the oncologist and his wonderful nurses.  And they explained it should not have happened (cancelled appointments, and hospice admittance).
Sooooo, we (Roger and I) are in better spirits.
However, Roger will begin chemotherapy on Wednesday.  Docetaxel, an IV drug, to be infused on Wednesday and then 2 more infusions three weeks apart.  Depending on how  Roger can tolerate this chemo, he can then start on Zytgia, an oral chemo which is low side effect.  Insurance pays on the Zytgia only after Docetaxel has been administered.   (not sure on the spelling of those names but close)
Sooooo, thanks for past, present and future prayers and thoughts,  very much appreciated!



Thursday, August 9, 2012

The nightmare of health care

Unbeknowst to us, Roger was admitted to hospice care.  How, you ask?  Roger and I are still in a questionable state of shock.
Back in May while Roger was in the hospital having the urostomy surgery, we had both the urologist and oncologist talk to us about the options.  there was still talk of rHadiation and chemotherapy.  An appointment was made with the oncologist for July 20.  I had called to check with the oncologist for an earlier appointment and asked if I could talk with a hospice provider for pallatative care.   Apparently, the call to the hospice ended with Roger being admitted to hospice.  When talking with hospice, the call ended with "you don't seem ready for hospice".
  So, I called today to check the time for the appointment.  And was told the appointment was cancelled.  So, I ask why.  and am told I needed to talk to someone else, and was put through to their extension, and of course am directed to voice mail.  Just not what I was wanting!  So I hang up and call again, get a different receptionist and ask why the appointment was cancelled and told the receptionist I was not going to the voice mail thing again.  Receptionist assures me I will talk with the person with an explanation.  And finally she tells me the person is going to call me back today.  And so I hang up.
And so I call back to get a receptionist at the appointment desk and get yet another and different receptionist (by this time I am thinking the "crazy" woman is becoming known) and explain (well okay, I did not explain so much as told) to the appointment person that Roger Bell has an appointment at 3 pm and he will be there.
Anxious to hear the story tomorrow at the oncologist appointment.