The Hospice Austin team officially took over BR's care on Wednesday. We met with his nurse and care coordinator that afternoon, and immediately replaced his Percocet with liquid Morphine for break-through pain. This brought about a small amount of pain relief, but not nearly enough to be called success.
Next, we met with the hospice doctor on Thursday, who decided to switch BR from Fentanyl patches to Methodone for sustained pain relief. We made the switch Friday, and again pain was knocked down another notch. So on average, BR is still in a great deal of pain, but feels better than before.
The Methodone has brought with it a bit more drowsiness, but not to the point where BR can't wake up and enjoy the day. It will be interesting to see what happens as the dosage is increased.
My niece, Jordan, has rejoined us as of Sunday to help out once again with the daily caregiving duties. It wasn't a moment too soon, as I had somehow thrown out my lower back while making groceries Saturday evening. Luckily, BR was already in bed, so the next transfer wasn't going to be until Sunday for the morning routine. Maybe I would feel better in the morning.
No such luck. When I woke up, my back was just as bad, if not worse than it was when I went to bed. So I convinced BR to delay the morning routine until Jordan arrived. And like an angel, arrive she did. She immediately took care of BR, then joined us as we watched the Saints advance to the Super Bowl. What a great evening!
Monday, January 25, 2010
Tuesday, January 19, 2010
Just breathe
I've had a cough since November. At first it was non-productive, but very annoying. By the end of the holidays, I'd developed full blown bronchitis. Combined with my annual cedar allergies, and I have only been capable of life's bare essentials for several weeks. A suite of antibiotics, Benedryl, and some codeine cough syrup later, and I'm back to the living.
We had a hospice assessment interview about a week ago. The intake nurse was as nice as nice can be, but she didn't hold out much hope for hospice. Based on what she'd seen, BR's prognosis didn't fall within the six month life expectancy. However, she did offer to have their palliative care doctor consult with the Which doctor on BR's pain management.
Oh, did I forget to tell you that we are staying with the Which doctor? After the Prialt trial failed in early December, we met with a new pain management doctor here in Austin that was recommended by MD Anderson. We were told that he would be open to helping BR through the transition to palliative care. Nothing could have been further from the truth. This doctor took one look at BR's medication list, and decided that he could not continue down that path. Being as open minded as we could, we asked what he recommended.
"You need to come off of these meds so we can see how much pain you are really in."
That didn't sound like much fun.
"What level of pain do you consider acceptable, Doctor?"
"So much of pain is how the mind perceives it. Consider if you won a million dollars in the lottery, and then I came up and hit you on the thumb with a hammer. You'd be pissed off with me, but you'd get over it. Now consider if you lost your ability to walk, and then I came up and hit you on the thumb with a hammer. You would likely fall into self pity that would only make the pain worse."
"Could you just not hit me on the thumb with a hammer?"
The whole time we were with the doctor, nurses and PAs were interrupting every five minutes or so to get his signature on different forms and prescriptions. After about 30 minutes, BR had had enough.
"Thank you for your time, Doctor. You obviously have more pressing things that need your attention."
As we left, the receptionist asked if we needed to make a follow-up appointment. "I don't know," I honestly responded. We now had a neurologist recommending hospice and palliative care, and a pain doctor wanting to take away all pain medications to see how painful it would be. My head was about to explode.
It takes about 30 minutes for us to drive home from the doctor's office. About 15 minutes into the drive, BR's cell phone rang. It was his neurologist. The pain doctor had called him to discuss BR's case. The neurologist basically laid it out like this: "You can either continue looking for alternate pain therapies that may or may not bring relief, or you can move on to palliative care. I will support either decision."
&$%$%&%^*#@%$^#!@#
When I look at BR, I can see how tired he is of all the pain. It's been over two years and he has only experienced relief a handful of times, most of which ended with him falling asleep for extended periods of time. Now, I'm no sadist. I'd rather he be comfortable and sleep a lot than spend the rest of his life in pain searching for a cure that may not exist at all.
Yet BR has been having a hard time choosing a course of treatment, even after some very helpful discussions with his family over the holidays. So far, he's agreed to have the hospice assessment, which, as I mentioned, took place last week. Well the call came this morning, and they want to start hospice services today. The reality of it all has me winding my butt and scratching my watch, as Truvy would say.
We had a hospice assessment interview about a week ago. The intake nurse was as nice as nice can be, but she didn't hold out much hope for hospice. Based on what she'd seen, BR's prognosis didn't fall within the six month life expectancy. However, she did offer to have their palliative care doctor consult with the Which doctor on BR's pain management.
Oh, did I forget to tell you that we are staying with the Which doctor? After the Prialt trial failed in early December, we met with a new pain management doctor here in Austin that was recommended by MD Anderson. We were told that he would be open to helping BR through the transition to palliative care. Nothing could have been further from the truth. This doctor took one look at BR's medication list, and decided that he could not continue down that path. Being as open minded as we could, we asked what he recommended.
"You need to come off of these meds so we can see how much pain you are really in."
That didn't sound like much fun.
"What level of pain do you consider acceptable, Doctor?"
"So much of pain is how the mind perceives it. Consider if you won a million dollars in the lottery, and then I came up and hit you on the thumb with a hammer. You'd be pissed off with me, but you'd get over it. Now consider if you lost your ability to walk, and then I came up and hit you on the thumb with a hammer. You would likely fall into self pity that would only make the pain worse."
"Could you just not hit me on the thumb with a hammer?"
The whole time we were with the doctor, nurses and PAs were interrupting every five minutes or so to get his signature on different forms and prescriptions. After about 30 minutes, BR had had enough.
"Thank you for your time, Doctor. You obviously have more pressing things that need your attention."
As we left, the receptionist asked if we needed to make a follow-up appointment. "I don't know," I honestly responded. We now had a neurologist recommending hospice and palliative care, and a pain doctor wanting to take away all pain medications to see how painful it would be. My head was about to explode.
It takes about 30 minutes for us to drive home from the doctor's office. About 15 minutes into the drive, BR's cell phone rang. It was his neurologist. The pain doctor had called him to discuss BR's case. The neurologist basically laid it out like this: "You can either continue looking for alternate pain therapies that may or may not bring relief, or you can move on to palliative care. I will support either decision."
&$%$%&%^*#@%$^#!@#
When I look at BR, I can see how tired he is of all the pain. It's been over two years and he has only experienced relief a handful of times, most of which ended with him falling asleep for extended periods of time. Now, I'm no sadist. I'd rather he be comfortable and sleep a lot than spend the rest of his life in pain searching for a cure that may not exist at all.
Yet BR has been having a hard time choosing a course of treatment, even after some very helpful discussions with his family over the holidays. So far, he's agreed to have the hospice assessment, which, as I mentioned, took place last week. Well the call came this morning, and they want to start hospice services today. The reality of it all has me winding my butt and scratching my watch, as Truvy would say.
Saturday, January 2, 2010
Birthday Week Postcards
Moet and Mentholatum
Oh! Is there a tequila menu?
Settling in for the flight to Miami.
Over the Gulf of Mexico
Ocean view at sunset
You can't get there from here
Late night dining
Time for bed
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