Is it time for hospice?

BR's neurologist seems to think so. He's going to arrange for an assessment.

Since we returned from Houston, BR has been sleeping long hours. He wakes in the late evening for what would normally be our morning routine. Medication that is normally spread out over 16 hours is condensed into 8. I've been getting to bed around 4am, and am exhausted.

Seems we just get started and before you know it

... comes the time we have to pull the tube.

The trial failed. There was no relief. No side effects. No effect whatsoever. We'll ask the doctor about the chances of a mechanical failure of some sort, but it just doesn't look good.

No matter the outcome, I believe in celebrating beginnings and ends. So last night we had a delicious dinner at Pappadeaux. BR had fried catfish, shrimp, and onion rings, and I had a filet and rock lobster. We sat up at the bar, which is where we are most comfortable, and drank a toast to hope.

Push it up! Push it up! WAAAAY UP!

The pain doctor saw BR this afternoon. He didn't seem worried that BR has not yet responded to the Prialt, telling us that they start with a "center of the bell curve" dose. This means that at this does, about 50% of the people get relief. He then increased the dose from 2 micrograms/day to 9 micrograms/day, saying that BR should definitely notice a difference in pain level by dinner time, but will also likely to have some mild side effects.

He also commented on BR's sacral insufficiency fracture, and repeated the Which doctor's recommendation of sacralplasty. When I said it wasn't considered medically necessary by the insurance company, he was surprised, and offered to make a case on our behalf. Sweet!

Discharged, but not discouraged

I woke up this morning feeling a bit down. With each new procedure to control BR's pain, my expectations get set at ever decreasing levels. Yet still, I have expectations. When pain relief didn't find BR yesterday, disappointment found me and decided to stay the night.

But after a nice hot shower, I decided to take stock of some of the good things that we've discovered.

• BR tolerated the three hour drive to Houston quite well, and is willing to consider some leisure travel.
• He is able to rest comfortably on a regular bed with just the alternating pressure pad, a foam wedge, and lots of pillows. This opens us back up to air travel. We'll just need to rent a shower chair, and of course a ramp van for cities without ramp taxis.
• Caregiving duties seem a bit less burdensome in new environments. At home, anything that upsets the routine is viewed negatively. On the road, there is no routine. My problem solving instincts get a workout as we adapt to each situation.

So when I went to pick up BR from the hospital, I did so with an intentional optimism. There are still four more days left in the trial, and pain relief may still find BR.

We see the doctor next on Wednesday for another adjustment.

BR and Prialt - Day 1

Six hours after the catheter insertion, BR wasn't getting relief. The doctor wants to give it a full 24 hours before adjusting the dosage, but I feel pretty sure it's a bit too low.



Discharge is still scheduled for Tuesday AM.

And it's in

The doctor came out to let me know that the intrathecal catheter insertion went fine and BR is in the recovery area. He gave me some advice on how to handle any pump alarms, and confirmed my expectations for the rest of the week. We should know in the next couple hours if this first dosage level has any effect.

Waiting for the doctor

Waiting to be called back

Prialt trial starts Monday

It looks like all the planets have aligned, and BR's Prialt trial is a go for Monday morning. My understanding is that it will go something like this.

Monday:

• Check into MD Anderson
• Anesthesiology assessment
• Surgical procedure to insert catheter into BR's spine
• Initial Prialt dosage delivery started using external pump
• BR spends the night and is monitored for effectiveness and side effects.

Tuesday:

• Dosage adjustment
• Discharge from hospital

Wednesday:

• Dosage adjustment

Friday:

• Dosage finalized
• Catheter removed and trial ends

So by this time next week, we should know if Prialt will improve BR's quality of life.

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In other news, we participated in the Lights of Love 5k Friday evening. With temperatures hovering around 31F/0C, BR became chilled to the bone quite quickly, and ended up having to drop out as we passed our street about half-way through the course. Once I got him inside and warming up, I rejoined the course and finished in just under an hour.

I then came home and celebrated with Dede and Beth's chicken and dumplings. I'm going to call it a caloric net-zero.

Mama, Aunt, Fosamax, Prialt

BR's mama and aunt have once again made the trek from Louisiana to visit, comfort, and generally raise our spirits. We couldn't be more pleased to have them here. We'll be eating turkey gumbo (yum!) for lunch, and then BR and I will take them out for a steak dinner.

The results came back from BR's bone density test. He has osteoporosis. The GP recommends starting Fosamax, but I have some reservations. Certainly strong bones are a cornerstone of his quality of life, as is evidenced from the recent fracture. But from what I've read about Fosamax, it is yet another drug that may or may not help. I've developed a strong distaste for drugs that instead of curing a condition, only lessen the symptoms. Nobody seems to be asking why BR is losing bone mass -- just take a pill for the rest of your life, and maybe you won't get another fracture.

We are going to pass on Fosamax for now. With the Prialt trial next week, it isn't a good idea to add another medication to the mix. That said, I really don't like the thought of BR's bones breaking down. I need to read up on how to care for someone with osteoporosis who is also wheelchair bound.