Home Away From Home

We are in the hospital for another fever.  When they started giving John less chemo and he stopped getting fevers for a few weeks, we were so excited!  And then John got a fever and it went away pretty fast, so we didn't come to the hospital.  And then that happened again; and now this is the third time that happened, except that the next night the fever came back again.  So Monday we came to Huntsman for radiation and then got admitted to the hospital.  It was a long day.  Radiation was at 10:30 and then we met with Dr. Poppe to discuss how miserable John's side effects are.  Dr. Poppe was trying to coordinate some stuff with Dr. Wright, so we were in Dr. Poppe's office for at least an hour. Dr. Poppe was very compassionate and helpful. Then John got labs drawn and a chest x-ray to check for infections.  Then we waited for an hour and a half for him to get admitted to the Acute Care Clinic.  Then we sat in the ACC for 3 or 4 hours until the 4th floor had a bed available for him.  And the whole day John didn't talk much (his voice doesn't work because the radiation has affected his vocal chords) so we played charades and made-up sign language to communicate, so mostly we sat in silence.  At least the ACC waiting room had puzzles to work on.  And then thank goodness for Seinfeld reruns that play back-to-back while we were in the ACC waiting.  I knew it could have been a long day so I had brought a book, but it wasn't very interesting.

John's list of side effects for the doctor yesterday were dry mouth, thick mucous causing choking, congestion, mouth sores, too much pain to eat.  They gave him Mucinex which has made a huge difference in just one day.  They scheduled putting a feeding tube to be put in him.  The congestion and pain are still up and down. But overall he feels a lot better than he did over the weekend. 

John's doctors all like to check his mouth for mouth sores and especially because he has two major ones that are bothering him now, Dr. Poppe checked on them yesterday.  Dr. Poppe always tells John to say 'ah' when he's checking on the sores.  I'm not sure whether or not all the other doctors have him say 'ah'. Both the last time and this time Dr Poppe has told John to say 'ah', John says 'ah', then Dr. Poppe says 'ah' a little louder than John did and so John repeats 'ah' a little louder.  I can't be sure, but it seems like Dr. Poppe has this twinkle in his eye likes it's a joke.  They both sing 'ah' back and forth and keep getting louder.  I try so hard not to laugh because to me, it feels like a joke, but maybe he really does need John to keep saying/singing 'ah'.  Yesterday this little duet was even more funny to me because John could barely make noise when he was talking and so his ah's were a little higher pitched than normal since he had to strain so hard.  He probably hit some high alto notes; I have never heard his voice go so high.  And the doctor still tried to get him to go louder a couple times.  Too bad I didn't record it, he probably could have landed a role in a play.

Today I watched John get set up for radiation.  I saw the lasers that they use to line him up just right.  I saw him get situated on the table.  I watched the nurses attach his mask to the custom headrest.  And then I saw John's body laying still on a table.  He looked just like a dead body in a morgue, except creepier because his mask made him look zombie-ish. But it was cool to see the machine rotate while they were getting him lined up.  I had pictured just a small part of the machine moving, but most of the machine actually rotates 360°.

I have to thank my neighbor who last minute agreed to watch our kids and then watched them longer than I had originally told her it would be!