Long Day in the Land of Chemo #2

I think Dr. Ansari jinxed us with the first protocol of chemo.  He told Johnny he was "thriving" on it, but I'd now like him to eat those words.

Let me give you the run-down of yesterday in the infusion center.  It was a very, very, very long day.

Johnny's appointment was at 8:45.  We arrived and like every other time, he had his port accessed, labs drawn, and our visit with Dr. Ansari. 

Dr. Ansari was happy to see Johnny feeling significantly better than the last time we were in there.  Johnny's weight was steady, so no more weight loss was good. After discussing the seriousness of the diarrhea and vomiting from the first round, Dr. Ansari said that he would add a once a month injection called Sandostatin to combat the severe diarrhea.  Hopefully this will be as effective as the Emend was from the first protocol.

Then off to the infusion room.  Johnny was still feeling a little run-down and not himself, so he chose to lay in a room with a bed again.  I actually like it back there, so I didn't mind at all.  The only thing that bothers me is that he isn't being social in one of the only venues available to him during the week.  Maybe next week he will feel like being out among the people.

Before they started the anti-nausea med (Aloxi) I asked the nurse if they could hang extra fluids.  Normally when they run a piggyback med, they hang it with a 500 mL bag of fluids.  I asked if we could go with a full liter, possibly more.  I told them I was anticipating the dehydration that we went through before, and it made sense to me to get as much in to him as we could before it started coming out.  The nurse thought it was a great idea, so they ended up giving him a total of 1.5 liters with the Aloxi, Decadron, and CPT-11. 

We waited and waited for the liver function lab results.  When they finally came back, boo hiss.  His alkaline phosphatase was still too elevated.  As a matter of fact, it has gone up.  The SGOT/SGPT has basically remained the same, but within the range allowable for the HAI pump chemo to get started.  We have no idea why the alk phos is going up, but it makes me mad.  Really, really mad. 

To be perfectly honest, it also made me scared and while Johnny lay in the bed receiving the remainder of the fluids, I started to cry.  Fear and frustration are a terrible combination for me.  Always means tears. 

Johnny is always the voice of reason.  He reminded me that the original plan was 6-8 weeks after the pump placement was when they would start the HAI chemo.  So, technically we are only at 4 weeks post-op.  I know, I get that.  I just wanted it to start without any more issues.  Maybe we shouldn't have even looked at the labs yet. . . I don't know.

I plan on calling Dr. House to find out if there is something we should be doing/not doing to get the alk phos down. 

After the infusions were finished, we went through the emptying and re-filling of the HAI pump.  Johnny was still nervous with the procedure, but it was done and over in a couple minutes.  I can tell that it will continue to get easier and easier each time we go.  Several people were in attendace for yesterday's performance, because they want to get as many people trained as possible.  They, too, are anticipating seeing an increase in the number of HAI pumps with Dr. House being in such close proximity to South Bend. 

Finally, with everything else complete (I still haven't figured out why it took allllllll daaaaaayyy looooonngg.) Johnny got the shot in his butt for the Sandostatin.  We were out the door just after 5 p.m.

So, all of that was yesterday.  Last night Johnny had a little vomiting but not too bad.  He didn't sleep well, but didn't need to get out of bed much.  All day today he has been quiet and has had the on-again/off-again tummy ache.  No firerhea as of yet.  Vomiting has started back up late this evening, so I am starting to get a little nervous for the remainder of the night.  Praying hard that everything eases up and he will be able to get some sleep.  . . .sigh . . .

Please pray for a decent night for Johnny and that he doesn't get dehydrated.  Also pray that the liver enzymes cooperate with us and will be within an acceptable range for the next round.  We have decided to not even check next Monday; we will just wait the two weeks until his next scheduled systemic infusion.

Thanks to Amberg's for a wonderful dinner last night!