Plans change

Every time I think I know what the path forward is, it always seems to change.

The last 1.5 months or so, I have been having continued vomiting, alternating with a loss of appetite which was followed by diarrhea.  The symptoms seemed to reflect my original diagnosis 10 years ago of a bowel obstruction but, when I had written my last blog entry, the symptoms had disappeared for about 1.5 weeks.  Well, that all changed again on Monday, 4/2.

Once again, I got severe stomach cramps and knew I had the same symptoms again so my wife took me to the ER to see if we could uncover the cause.  After a short (1hr) wait in the waiting room, we got back to talk to the doctor.  He also suspected a small bowel obstruction and gave me 800cc's of a contrast to drink an hour before another CT scan.

Normal CT scans also include IV contrast but my right kidney's function is somewhat diminished so we avoided the IV contrast and went with a standard oral contrast.  In spite of the lack of IV contrast, a very bloated small intestine seen right before the point where I had a mass of mescenteric tumors.  This was the classic indication of a partial small bowel blockage.

What I had 10 years ago was a complete blockage while this is a partial blockage.  Think of your garden hose that has been bent around a corner with a small kink in the line.  As long as the pressure is low, the water still flows.  As you increase the pressure, the kink becomes more pronounced until it finally shuts down any passage of water and this is what was happening to me.

So, the nurse inserts a Nasogastric (NG) tube up my nose and down into my stomach to begin sucking out as much as is possible on the front side of the blockage.  Immediately, almost 600cc of the contrast that I had swallowed came up and I the pressure began to be reduced on the obstruction.  I was then transferred to Penrose St. Francis where most of my doctors work.

NG tubes are no fun.  They hurt going in and, once they are in, they continue to hurt both your nose and the back of your throat.  It made it difficult to talk, sneeze, cough, or even dry swallow.  They give you a cloraceptic type spray to try to numb some of the throat but it does not do much at all.

Finally, on 4/4, I began to pass some gas which is an indication that the bowels are beginning to free up and I got the hateful NG tube removed.  On 4/5, I got my first clear liquids for lunch, followed by full liquids for dinner.  Hopefully I get released on 4/6 to go home.

Our plans are quite involved at this point but still up in the air.  On 4/9 (the office is closed on Good Friday), I will be contacting the leading carcinoid surgical group in the country who operate just outside of New Orleans.  In a perfect world, I would check into their offices on 4/16 and then will have surgery sometime that week.  These docs are the absolute best when it comes to carcinoid as it is almost all they do.

They have all the latest goodies such as radio guided surgery (using radiation to identify the tumors while I am open), have all the latest diagnostic tools, and know exactly how carcinoid behaves.  Other than the week after my first diagnosis, this will be the first time that my knowledge of this cancer will be exceeded by the surgeons that will be operating on me.

I imagine I will end up spending about 2-3 weeks in New Orleans and my wife is already looking forward to the beignets that she will be consuming.  I have never had one but my love of donuts will certainly transfer!

Once we return home, there will be the surgery+6weeks of recovery until I return to work.  Hopefully I will have significant reduction in my total tumor volume and we can then return to waiting for the PRRT treatment which is just undergoing approval in the United States.

Any suggestions of things to do in New Orleans are appreciated although I don't think we want to go to the Sean Payton hall of shame...