We are a go for Surgery on 6/23

For about 7 months now, I have known that this day was coming and it looks like it is finally here.  We met with Dr. Boudreaux today and it is obvious that he doesn't want to do this surgery because of the risk of post surgical problems and my physical weakness going into it and I agree with his assessment.  Of course, we are getting our hand forced because my body just isn't doing well on TPN.

Dr Boudreaux's first goal is to get me to eat.  His second goal is to get me to eat and his third goal is to get me to eat.  I have three other areas of concern:

1. Tumors wrapped around the ureters.  These will be addressed at the end if everything else has been handled and he has good access
2. Tumor near the rectum.  Currently low priority because it is hard to get to and the full solution is not tolerated well when you have a significantly malnourished patient
3. Tumors in Liver.  These may get addressed as the MRI seems to imply a few large masses that are easy to get to and could be removed without much risk.

This plan works for me.  Getting me to eat gets me on the path back to where I am strong enough to potentially tolerate some of these other procedures.  Whether or not we do these other procedures is another question but all of that requires a higher level of nutritional sufficiency and to get there, I need to eat.

This is not to say that there have not been curveballs on this trip.  We flew out of Colorado Springs, connecting through Dallas/Fort Worth to Baton Rouge.  As we were pulling up to the terminal in Colorado Springs, I got a phone call that the flight to DFW was being delayed by 2 hours which ate up most of our three hour layover.  By the time we got to the gate, the delay was 2.5 hours and then became a 3 hour delay when they gave up on the plane and got another one along with a new crew since they timed out as well.

Of course, our connection was now blown so they gave us a hotel in Fort Worth and we stayed the night.  They were all out of their 'normal' hotels and wanted us to find our own and then mail in for reimbursement until Stephanie started getting argumentative and, what do you know, here is a hotel!  Well, we stayed the night and then flew out Tuesday morning, hitting NOLA just one hour before our clinic appointment.

I have also had some issues with my G tube over the past week or so with bleeding and a little irritation at the site.  The pain grew tremendously this last weekend to the point where I was taking 20mg morphine as soon as it was allowed on my prescription.

When we got to Baton Rouge and got our luggage, I went to change the dressing on the G tube and it was obvious that the balloon that was supposed to hold it in place had deflated some and it was coming out.  So, the pain was due to the opening being forced open more than it should.  I was able to push it back in and then tape it in place and the pain has been mostly abated.

The final curveball is that they are just going to admit me to the hospital today.  Then they will re-inflate the balloon properly and get me started on Sandostatin right away to try and reduce the risk of Carcinoid Crisis.  Stephanie will stay the night at the Hope Lodge and then stay the night in the hospital room Wednesday night before the surgery on Thursday.  Dr. Boudreaux is on call this weekend as well so it is nice that he will be available.

Starting Thursday, I won't be able to post for obvious reasons so I will refer you to Stephanie's caringbridge where she will be posting updates.