First week at home

Well, we have been home for a week now and things are starting to return to a minor sense of normal.  I am still quite weak with a short 3/4 mile walk making me tired but I am starting to add some food by mouth!  I am getting more used to having an IV connected to me continually for the TPN but it still feels quite odd much of the time.  Stephanie was able to find a Camelbak pack to carry my TPN around and it is much more convenient than the bag that was provided for free.

I am adding Juven for my 'breakfast' to help give my bowel something to do.  I then mix up 32oz of Gatorade that I have for lunch and dinner.  This gives me about 2000 calories per day right now which is getting closer to the target of 2400 calories.  I have added a bottle of Ensure for 'lunch' and it appears to be processing through my system.  Adding the Ensure puts me at about 2250 calories (2350 for the Plus version) which, given my relatively sedentary state, should result in some weight gain.

The worst thing right now is dealing with the continual thoughts of food.  I have cravings for a bit of everything but mostly salty foods right now.  Things I think of:

• Popeye's fried chicken with spicy mashed potatoes and gravy
• McDonald's french fries
• A medium rare grilled ribeye steak with twice baked potatoes
• Chili's chips and salsa (their chips are some of the lightest and crispiest I have found)
• Tacos with my wife's taco meat seasoning
• Chipotle chicken fajita burrito or crispy chicken tacos
• Nachos supreme (no beans of course)
• Popcorn
• Smartfood
• Five Guy's cheeseburger with grilled onions
• Grilled Pork New Orleans (wife's cooking again)
• BeauJo's mountain pies 
• My wife's biscuits

Now, given that my body continues to process the Ensure, I may have some minor options for some of the food I have been craving.  I only have a partial obstruction which does allow some food to pass but just not a large amount.  This means that I may be able to substitute in some of the options above.  Things I need to avoid are foods that take a long time to digest such as raw vegetables (no problem there), seeds,  or fatty foods (many conflicts there) but at least the mashed potatoes and gravy meet the criteria!

Friday night was the great experiment.  I skipped the Ensure for lunch and had some Popey's spicy mashed potatoes and gravy and am waiting to see if it stays down.  We also toasted marshmallows on the DeLine's new fire pit and I ate a couple of those as well.  So far (Saturday morning now), no cramping but I am still a bit uneasy about my digestive tract.  It's going to be a long wait for the surgery but I am certain I am going to eat well afterwards!

Speaking of surgery, I spoke with the nurses at the Neuro Endocrine clinic in New Orleans to get a status on the Nano knife.  Surgery is dependent on getting access to the Nanoknife and the company representatives say that the FDA approval may not be until the middle or end of May now.

Certainly surgery could be performed without the Nanoknife.  This has been done for years but it has the increased likelihood of complications and these are some areas where we really want to avoid complications.  There is no problem with obtaining the use of the neoprobe for guiding the surgeon's scalpel, we just need to wait on the Nanoknife.

So, given that surgery is now further off than originally expected, we will have to choose a day for surgery and then hope that the technology is available at that time, postponing surgery if it is not available.  I am also exploring the possibility of returning to work part time while we wait for my surgery, maintaining my short term disability status.  This will help me feel a bit more part of the world for a while as well as exercise my mind a bit more.

On a positive note, having a computer orders of magnitude faster with almost 1000 times more memory, I was able to disprove something I postulated 18 years ago during my doctoral work!