2011-11-01: Palliative care update

Not great news...

I saw my palliative care doctor yesterday. I expect an update from my oncologist today or tomorrow by phone.

I don't expect much from my oncologist as my brain activity will likely invalidate me from being eligible for clinical trial experiments.

So, on to palliative care... The pain I've been trying to deal with for the past two weeks in my lower back is apparently more than just musculature or spinal. I have 3 Dr. opinions that all are telling me that it is likely referential pain caused by the tumor pressure on the fluid sack lining around my liver and/or pressure on my ribs from the same tumors. So I'm likely to be in pain for the rest of my life. The next step is likely a tear in my liver fluid sack lining resulting in a leak into my stomach that will cause eventual bloating from fluid, not from fat. That may alter the location of the pain in my abdomen, but not eliminate it.

So I'm on new drugs. A slow acting (12 hr) version of hydromorphone called Hydromorph Contin (3mg). Starting out at once per night before bed for 3 days while my body gets used the drowsy side-effect, then twice a day after that.

So I'll still likely have to take the occasional ibuprofen for swelling and occasional hydromorphone. I have to start logging my usage of them so that the long acting hydromporph contin amount can be adjusted as part of a longer term pain management system.

I'm expecting a 3-position "left chair" some time today. Kind of like a lazy-boy chair recliner that can push me out of it so I don't have to lift myself out of it.

-- Shane