And now back to living…

As you may know, we didn’t get the news we were expecting from the surgery.  The easiest way for me to explain is to walk you through our day on Wednesday.

Francis was rolled back for surgery at 8:00.  We knew there would be prep for the actual procedure by a urology team and some additional IV lines placed by the anesthesia team that would happen after Francis was under but before the big cut.

I was told to expect an update from the nurse every two hours on the even hours of the day.

At 10:00 a.m., I got the first update from the nurse.  She told me that the incision happened at 9:05, and that Francis was stable and his vital signs all looked great.  I asked if they had decided to move forward with the procedure as planned, and she repeated just what she told me.  So much for information.

I sat in the surgery waiting room working a 1000 piece jigsaw puzzle.  Having 12-18 hours of waiting to burn, I figured I could make a significant dent in the puzzle during those hours.  Francis’s dad and stepmom waited there with me, and planned to attend updates with me.

At a little after 11:00, the volunteer manning the waiting area approached me to let me know that the surgeon was here and would like to speak to me.  I immediately felt like throwing up, and walked to the consultation room.

Dr. Keith Fournier was there in his white coat with his briefcase, I think my brain began to process that this was unusual before I truly realized what was happening.  He told me that his part of the surgery was complete.

As I understand it, and we’ve since had it clarified, the surgeon was unable to do much of anything other than place a G-tube to replace the function of the NG tube for Francis.

He described that the cancer that was present when viewing the inside of Francis’s abdomen during the laproscopic procedure in December had grown and spread.  Additionally, he informed us that the tumor was covering the mesentery, colon and lower third of Francis’s pelvis and the organs in that area.

Dr. Fournier explained that to remove all the organs and tissue associated with the tumor would have so severely impacted Francis’s quality of life that it wouldn’t have been worthwhile.

What we believed was an intestinal obstruction wasn’t exactly as it seemed either.  Francis and I had wondered all long where the apparent blockage was located.  When the original surgery happened at Mayo Clinic, we believed that the obstruction was addressed and wouldn’t be a problem again.

In a way, we were correct about the repaired obstruction.  The mesentery holds blood vessels, lymph vessels, and nerves.  The infiltration of the tumor through the mesentery was the cause of the “obstruction.”  In fact, no part of the bowel was truly obstructed.

Dr. Fournier pointed out that upon watching the bowel during surgery you can actually observe intestinal peristalsis.  In Francis’s case, too much of his intestines were affected by the tumor disruption through the mesentery.  As a result, much of Francis’s intestines weren’t operating at all.

Ultimately, this is a devastating prognosis.  Francis will be unable to consume food by mouth.  He’ll be limited to a small amount of oral fluid consumption.  He likely will be unable to pass stool or gas.

At this point, we understand that Francis will continue with the TPN (total parenteral nutrition) through a PICC line in this left bicep.  Because Francis has limited intestinal function, chemo isn’t an option either.

So now, where does that leave us?  Good question.  These are some of the things we’re still trying to work out.  What we do know is that to do nothing only gives us months of time together.

You have been so generous with your words of kindness, prayers, cards, texts, emails, and support.  We will continue to request your prayers for us, Couper, Riley, and our families.  I wish I were able to respond to each of you individually, but I’m sure you will understand that it may take me some time to do so.  Either way, we remain grateful and completely humbled by such a tremendous outpouring of love.

We face some difficult conversations and painful decisions in the days and weeks ahead.  As we begin to wrap our heads around what we must do and more immediately how we get Francis out of the hospital and back home, I will do my best to keep everyone up to speed through the blog.  I appreciate your continued patience as we ease back into life with this new reality before us.