Well, that's interesting

This is the middle of our second week in Houston. Paul has been inpatient since July 5th. But he isn't receiving another cycle of chemo as we had anticipated. Instead the first week was spent looking for a possible cause of some subtle mental confusion Paul has had. Nothing major, just some short term memory lapses mostly. They ruled out all the big things - no new tumor growth, no problems with the brain visible by CT, no new liver problems, and no infections of the gut or in his ascites. So they basically chalked it up to a combination of liver disease, fatigue and chemobrain.

The cycle of chemo he had 5 weeks ago really did him in physically and he lost a great deal of strength. So last Friday Paul was transferred from the lymphoma unit to the rehab unit here at mdacc. He's doing well in rehab; working very hard at physical therapy and occupational therapy. Which both amount to pretty much the same thing for him - exercise.

Paul has occupational therapy first thing. They work on standing endurance, some large muscle group work, and some fine eye-hand coordination. Yesterday Paul worked a puzzle standing up and today he played Jenga with the OT while standing up. After an hour rest Paul returns to the rehab gym for group pt. In this group they do a sit and be fit style routine using therapy bars for some of the seated work. During rest periods they do an almost group counseling session or they play a game. Today it was Outburst. No teams or anything, just whoever thinks of an answer shouts it out. It's fun and they even include me so it's a break from the monotony. It can get us talking as well. Paul is one of the most able in the group right now. A large percentage of patients in rehab had spinal or brain surgeries for their cancers. It really puts things in perspective for me when someone about my age casually mentions they are learning to walk again!

Paul's final session of the day is one hour with the physical therapist. They walk to build Paul's endurance and they are working on going safely up and down stairs. Paul is doing well with this and she says she's confident Paul will be able to use the stairs at home.

In the midst of all this we've been dealing with two other issues. Paul is nauseous all the time. He has two nausea drugs on board at all times and he still is throwing up occasionally. But it's better today and he's managed to keep down a little food and some important medicines that can't be given IV. Here's hoping on that. It is the one big obstacle to being discharged on Friday.

The other issue I find quite fascinating. Paul has has an ear/hearing/voice issue I've mentioned in earlier posts. When he sits or stands in an upright position for awhile his ears close off and he hears his own voice very loudly. Much like talking with ear plugs in. That in turn causes Paul to lower his voice to a whisper and sometimes he's barely audible. Occasionally his nose will start dripping a clear, thin liquid. It doesn't resemble mucous and it happens even when he's inactive but sitting up so it's not sweat. So what is this mysterious liquid? Well there's three possibilities we've been presented with: 1) allergies - but we all doubt it since Paul has been here for 15 years and never had a problem, 2) an infection - but he's not showing signs of infection, or 3) it could be a slow leak of spinal fluid! The tumor that originally was biopsied and diagnosed was quite large and we know had inervated some bone. It also responded very well and retreated quickly, potentially leaving a hole somewhere in the thin bone dividing the brain from the sinuses. We've tried to collect the fluid for a test, but there hasn't been enough to do an assay. We're holding off on more invasive, aggressive testing for now since it's not dripping very much. Next time we return to Houston, Paul will do a two-day outpatient test to try to determine if and where a leak might be.

So that's where we are right now - two steps forward and one leap backward, but hanging in there all the same.